sideofsalt

My usual routine is I take 5mg midodrine twice per day, sometimes supplementing with 2.5mg as needed. Recently, I did not feel the need to take the second dose, so I have been taking 2.5mg as needed. I just saw my cardiologist who said that he preferred I take consistent doses and spot treating is not recommended. If you are considering increasing your midodrine, there is one blanket recommendation I can make: INCREASE VERY GRADUALLY (titration is key). At the beginning of my POTS, it took me a while to understand how I felt on the medication and how to adjust. I made the mistake of literally doubling my dosage after my doctor instructed me to but realized after an unpleasant few days, that I should have gradually increased over a series of days. Some of us really do have to increase all doses, some of us just have to add a dose, and this even changes over time. I ended up just needing to add a mid-day dose.

Hi Janet, I hope IVIG provides relief for you if you opt to go that route and I'll be looking out for your progress either way. Best of luck.

Hi Janet, thanks for sharing your story. I see in your signature line, Alpha Lipoic Acid, CoQ10, Acetyl L Carnitine (or is it Acetyl L Cysteine?). Do these address your mast cell issues? Does CoQ10 give you hypotension?

I looked into it long ago but decided that since I can't handle histamine-rich foods like fermented vegetables, that the diet would not be complete for me. Fermented vegetables are a key part of the GAPS diet. I decided instead to work with a registered dietitian who prescribed a diet customized to my lab work and symptoms and that worked for me. Please keep us posted if you decide to go that route!

That is a huge challenge. Right now, I do a lot of work from home, mainly computer-based work. If your son is interested in computer-based work, there are lots of great training options at lynda.com.

thanks TwynnB and gjensen. All good points to consider. I am up and down. If I'm in a downswing, will my dog be able to tolerate it? Will I be able to tolerate the dog if he/she is not tolerating me? Maybe I just need a breed/temperament that's best for my downswings.

Thanks for sharing your thoughts everyone, first, I'm going to circle back to my cardiologist who wanted to know if my POTS is flared up by anything other than my hormone cycle (I can't say that it isn't right now, but I have not had tachycardia since last summer - during allergy season). I have also contacted Dr. Cem Akin's office to see if he can recommend an immunologist out where I live. Depending on whether I get a lead from Dr. Akin's office, I'll follow up with my current allergist to pursue the mast cell activation route in 2 weeks. I have not had luck joining mastocytosis groups or forums to get doctors lists (it seems TMSforacure is no longer staffing support groups) so I figured I should just call up the leading experts to see if I can get any help! I'll keep you posted with any progress.

Right, as I look at some of the mast cell websites, I see that there's a whole set of emergency and anesthesia considerations specific to mast cell.

My allergy symptoms have been pretty intense when pollens are up, especially between my Singulair doses. I have very little classic sniffle-type symptoms, but more adrenaline spiking, stomach churning, tachycardia, some blood pressure spikes, and now face/head flushing and at times, swollen esophagus. I saw my allergist because Singulair is supposed to be taken every 24 hours but symptoms can break through as early as 16 hours. He acknowledged my symptoms as being "odd" and suggested I take it more often, up to 12 hours each dose if I need it. I asked him about MCAS but he said that if my POTS is well-established, he wouldn't see a need to seek a diagnosis. What do you think?

Sounds like you are on your way to recovery!

You have wonderful friends!

Becia, it took me a full 7 days to be fully recovered. The first two days were the hardest, and I seemed to improve every day afterward. The prep was not a problem, surprisingly. Best of luck!

Bigskyfam, I'm so sorry for your loss today.

Thanks Corina, I will look for it.

Hi gjensen. Yes I believe ketotifen is an H1 blocker and is unique because it also prevents further release of histamine (the other antihistamines if I'm correct only block histamine receptors). I read about a person who tried multiple antihistamines only to have severe allergic reactions to each and they said they eventually discovered they had an amine allergy.

I'm looking for the forum's experience with mast cell stabilizers. I'm pretty convinced I have some form of mast cell activation as I'm entering the pollen season early, and am getting frequent stomach churning and now, tachycardia. I'm curious to know what are the best practices for POTS patients? I'm going to talk to my allergist tomorrow and want to frame my conversation in terms of POTS. I do know we are all different, but I just want to be informed! Outside of the OTCs (like Zyrtec/Allegra/Claritin), are ketotifen or cromolyn or other prescription mast cell stabilizers recommended for POTS patients over others? Do you start out with one and add another? My understanding is that some target the digestive system and some target the whole body. I also take Singulair to help open my airways but it works as a potent nausea/acid controller as well, as I have learned in the last couple of weeks. Thanks for any input!

Unfortunately I get most of my POTS symptoms when my hormones are fluctuating dramatically. This can be around ovulation time and prior to the beginning of my period. I even find my salt intake can backfire around this time, because I can get adrenaline surges and the salt exacerbates it. This can leave me shaky, including insomnia and being far too hot. I have not found any one thing to make this easier than to plan for it (including lots of rest) because even though it doesn't strike with the same intensity every time, there is some predicability to it. I have tried oral contraceptives to dampen the hormonal fluctuations but it came at a price which was severe migraines.

Good points Katybug - my activity level is variable, so I will be home a lot some days, and not a lot on others. I hope your girl is recovering from the ice. Thanks Bigskyfam, I'm grateful to be able to sound my questions to a board like this! I'm sorry about your dog's illness.

Thank you for all of your responses! Sunshinegirl - I have met a few poodle mixes and am impressed. The therapy angle is an interesting one - I will consider that. MomtoGiuliana - my husband says that I should be prepared for having "half a kid"! Sounds much like your puppy watching experience! Pooter18 - that is so sweet that your dog snuggles with your mother-in-law. Jan - that's good advice on passing the puppy stage and going for a mature dog. I had a Golden Retriever mix in the past and she was the sweetest pal.

This has been very informative Katybug, thanks! The geneticgenie article is especially interesting because it discusses some of the biochemical pathways that affect methylation which may be at the root of some people's mast cell issues. I've read through some methylation articles before, but have not bridged the gap between mast cell and methylation. A number of interesting supplements are mentioned. How does one go about getting diagnosed for a mast cell issue anyways? Who does one see?

I am seriously considering adopting a dog for our family. My husband and I grew up with dogs and we know one is in our future, but the question is when. One factor delaying us getting a dog is me having POTS. My husband's concerns are keeping the house clean and running to the vet (and bills). And being awaken at odd hours (quality sleep is a challenge for me). I wanted to ask how much work is it for you dog owners? I've seen a lot of positive comments in the forum on the companionship and joy pets bring which is so inspiring. It's been many years since I've owned my own dog and cared for one.

At the beginning of my POTS a few years ago, I had trouble balancing my salt and water intake. It seemed like I would wash my salt away. Now, I drink a more consistent amount, about 1.5 liters per day. When it's hot, more like 2 liters per day.

Welcome Mal! Hopefully you will reach a point where medications will be helpful. Have you had any success by increasing salt in your diet?

Best of luck Raisin! I hope it brings you relief!

Welcome all!