Chicken Or The Egg... Which Comes First?

[Bigskyfam]

Which came first with your pots diagnosis?

Medication trial or subtype diagnosis?

Did your meds change after your subtype was given?

[Becia]

Meds. I failed the ttt in 30 seconds, and within the doc saying it's pots and getting me moved to a new room out of ICU, i was on midodrine.

[Bigskyfam]

Whoa 30 seconds? I thought my under 5min was quick! I've been reading your posts...thoughts are with you.im so glad you are able to connect

[Bigskyfam]

Becia... Do you have a subtype yet?

[looneymom]

Tyler's POTS diagnosis came first. He failed the TTT after 5 minutes but the cardiologist was able to run the test up to 10 minutes before he had to stop the test. Tyler was then put on medications. After a year of being on medications and not making progress, we have started looking for the underlying cause. However, the last test that Tyler had would indicate that he is hyperpots because of how high his norepinephrine was in the neurotransmitter test. He cannot stand and he would most likely pass out if we tried to do the standard test with the assistance of a tilt table. Our cardiologist has held off on giving a diagnosis with a sub type until we can figure out the underlying cause.

Rachel

[Bigskyfam]

Tyler must be an amazing kiddo. What a long road. I've loved reading your posts of hope and your always push for knowledge and ideas. Did his meds change once he was diagnosed as hyperpots? I'm med free at moment, improving slowly... Afraid of standstill...but starting to see more definite symptoms which is making me more prone to get as much testing here as possible. We live states away from autonomic clinics.

[Katybug]

I had 2 ttt which both showed pots within 3 minutes but they both also showed spontaneous highs and lows in my bp throughout the 45 minutes that each test took. However, when I asked my pots neuro about determining a subtype, he said he was more interested in finding a root cause and that subtype or no, we would still probably have to find the right meds through trial and error because he has found that everyone reacts differently. He also tries to not do tests that aren't really going to affect our tx plan. He was spot on! I have since found I have mcas and eds plus recent pharmacogenetic testing shows I process some drugs too rapidly to get any use out of them. He actually is going to study the pharmacogenetic results to see if we can tweak my meds.

[Bigskyfam]

What is the test for mcas? Sounds like you've made a good choice with doctors. What meds are you on? I can't read signatures on my mobile( I know a lot of folks post em) I only have a cardiologist. I feel I might need more.

[griffism]

My meds came first. This is because while the doctors that were treating me were not familiar with POTS they did know that the family umbrella, Dysautonomia, existed. So, they assumed I had some type of Dysautonomia, which they treated with fludrocortisone and metoprolol. After my POTS diagnosis, I changed my beta-blocker and added Midodrine!

[Bigskyfam]

Stefanie. Thanks for sharing! Was it hard for you to get your diagnosis? Did you see specialists?

[Becia]

No subtype yet. Hopefully with the clinic visits I have coming up, we can determine this better, and possibly change my therapies.

[Katybug]

The tests for mcas are somewhat unreliable because you have to have the blood or urine tests at exactly the right time (within an hour or twoof having a mast cell degranulation) to catch the markers out of range....tryptase and histamines. Although there is a doc in SC who's name I can't recall that is "the mcas guy" and he runs a bunch of other markers too. I know we compiled a list on a thread on here but I too am on my mobile so I'll have to look for that another time for you. I have an immunologist who is older than father time and has done extensive research and is a bit of a maverick so he gave me a clinical dx and has treated me appropriately. I also have a cardio, pots/migraine neuro, geneticist, and my pcp who all keep up on my care. I'll be adding neurosurgeon to that list in March as my neck is so messed up (probably eds contributed) that my neuro symptoms are getting worse. Possible that this is also contributing to dysautonomia symptoms too. Meds I'm on are Verapimil (calcium channel blocker), hydroxyzine (h1 antihistamine), high dose cimetidine (h2 antihistamine), depakote (migraine profilactic), maxalt (migraine rescue med), Biotin (deficiency due to depakote), B-complex vit, vit D3, CoQ10 (for energy).

Oh...it's Dr.Afrin who is the mcas specialist in SC. I'll see if I can find the thread on his add'l testing later.

[Bigskyfam]

Becia... I'll be watching your posts for answers... Good luck! Thx for sharing

[Bigskyfam]

Katybug. You seem like you got it together. I'm in mt... So far far away. May I ask if you are on a special diet? Gluten free... Etc. I'm leaning towards vitamins and diet since I've seen most improvement on lifestyle changes

[yogini]

I never found out what my subtype was. It hasn't been a focus for me because seems like doctors don't udnertand the subtypes bery well; doctors don't understand POTS and NCS well, let alone the subtypes. I am not sure how much the subtype makes a difference in the treatment.

[Katybug]

Bigsky,

I suffer from abdominal migraine too. Before we figured that out, I did go strictly gluten free for 4 months but it did not help at all and I didn't worsen when I started back on gluten. The depakote is what actually got my gi issues under control. I was trying to transition to a paleo type diet bhai ut it doesn't work for me because if my diet gets too high in fiber I start having motility problems so I try to just eat a balanced diet. I do actually have a few surprising foods I can't eat due to my mcas. I do not test positive as allergic on traditional allergy testing for these foods but I learned over time that when I eat them I have a myriad of unpleasant symptoms. This is typical of mcas. These foods are grapes, avocado, banana, pineapple, coriander/cilantro. Weird and random combo. I also starting to suspect cucumbers and mushrooms.

[Bigskyfam]

Yogini. I agree and feel the same. Not alot of us pots patients here. There are a handful of teens. I'm hoping to get my doc to talk to the pediatric doc.he seems pretty hip on research and testing here in our sleepy little town.

[gjensen]

No subtype, and no treatment plan. I have been diagnosed with small fiber neuropathy, so as far as I am concerned that is my subtype. From my limited understanding, I feel like identifying the mechanisms behind it all is more important than a label or name. When I read posts on here, it seams that some have overlapping subtypes. If it was not known that I had neuropathy, you could put me in a different box on different days.

My BP fell to 76/42 on the first TTT, and my HR went to 160. The BP continued to drop and the HR continued to rise, so they concluded the test in the 5 minute range. I usually have a decent drop when I stand (always have), but my BP rises afterwards. Occasionally it surges immediately. I know when this is, because the heart starts pounding immediately. My BP is normal otherwise. If you gave me a TTT 10 times, you would get 10 different results.

I am vulnerable to adrenalin surges. Particularly in the morning. If I had the test to see if I was hyper, I guarantee many mornings I would be considered so. Otherwise likely not, but there is some times that I do get this in spells that is not in the morning. So, depends when you tested me.

I was put on a Beta Blocker after a 200-220 Hr at an ER. I quit taking it after I decided it was not for me. I asked for Clonidine (because of my adrenalin surges), and started that.

I was asked to try Mestinon twice, and it did not work out well.

I filled a prescription for Neurontin (supposed migraines), but I have not taken any. I want to get an idea of what the root of that problem is, and try to deal with it more effectively. If it is possible. I am trying not to get a bunch of meds piled up before this is understood better. Trying not to get into not knowing which is causing what. I am anxious for improvements, but I do not want to make the mess bigger. Part of the anxiousness is that I do not feel that I am far off from this being manageable. Most days.

Along the way while I was running through the doctors, I got prescribed a lot of stuff for no good reason. No one was checking for interactions, etc. I just stayed away from all of that, and figured out for myself what was right or wrong.

I am experimenting with some herbal stuff to get an idea what could help. I have discussed some things with my doctor. Some things he does not feel good about, and some things I do not feel good about.

My neurologist is still looking for causes. I can't tell exactly if there is a lack of understanding, or if he thinks there is more to this. I think it is both. He is the sharpest doc that I have seen, and his resume is impressive. He is also very responsive and considerate. If I email him, I get a response within a day.The testing has been extensive.

I am afraid that I may understand this better than he, but I live with it day in and day out. I am intimately familiar. At least he is not quick to pile on the meds though.

If I was asked, I would be quick to suggest getting referred to Mayo or similar. Somewhere where you can get the full battery of testing by subspecialists early on. There is really no substitution for that. That is a good start. For a lot of us that would not be the end of it all, but seams the best way to start. They deal with this stuff everyday. As sharp as my neuro is, he is limited to what I tell him. Sure he gets the basics, but you cannot always be certain without testing to verify. As many symptoms that I have, it has to get confusing.

[Becia]

I have a question that I guess is kinda in line with this one here...

When I've been in the hospital this time, I've had more neurologists look at me and my condition, than a cardiologist. Who do you have as your primary care for this, cardio or neuro? I started having my cardio treat me, thinking that was the norm, but I know lots of us also have neurologists for this because it's a autonomic nervous system issue, and we have so many neuro issues with everything, so I'm now thinking maybe I need to have a neurologist be my primary pots doctor, for lack of better terms. Just because I seem to be getting more assistance with my dysautonomia symptoms, such as the headaches, seizures, triggers, than my cardio cared to deal with. He kept saying it wasn't a cardio issue that had me in the crisis I was in the last month, but my neuro kept saying it was because it was pots, and that's a cardio issue.

I kinda think it might have started as a cardio issue with me, but after all the meds and such, and now having so many neurological issues, it's possible it just kinda crossed over?

So, cardio or neuro primary assistance/manager of your condition?

[Katybug]

Becia,

I feel like each of my specialists takes an equal share in my care but I think it's because we identified my underlying illnesses and so each specialist can address their part. Although they are very good about listening to what the other docs are doing and I an very conscientious about updating them on what has been happening. My cardio stays involved because she prescribes my heart meds and because she likes me to have an echo due to my eds. The pots/migraine neuro specializes in dysautonomia and migraine so he handles that bit. The immunologist takes the mcas. The geneticist takes the eds struggles. My pcp sees every 3-4months to update his notes regarding what all the specialists have been doing so there is a record in case of emergency and for insurance and ssdi purposes. Plus if I do ever have a normal illness, like strep, he already has some idea what's going on with me and can make decisions based on all the info. I don't know if I'd be happy to lose any of them. Apparently the place to be if you have the evil three is Baltimore. And just as an aside, none of these docs practice at the big name hospitals people think of when they talk about the great medical system in Baltimore. So, I guess my point there is that you can find docs that can help and are competent in this field without a major medical system. They just have to care. I went through over 32 docs of all types before finding this team. I gave up a few times for a few months but that didn't help so I got back on the horse each time and finally found these wonderful people who really care.

[gjensen]

Katie, that sounds like an excellent arraignment. I hope that I end up as fortunate as yourself.

[Bigskyfam]

Gjensen. I know Vanderbilt sees the overlap in symptoms as opposed to subtypes.i admire the relationship you have with your doc. I only see a cardiologist/ int med doc. Neuro said I know nothing about it and wished me luck.i just dont feel like my doc is researching other than calling mayo doc for an hour. It seems like you that I research on web and present to her... Then she says try these two meds, but doesn't talk about my thoughts. I see that you are a great historian and very sharp. I think if nothing else, that is in your favor.

[Bigskyfam]

Katie, I love the sound of your dream team. When did you know when to move on to another doc?

[Katybug]

Well...a couple of them were easy to leave making comments like "when was the last time you had a boyfriend" and "I'm sure if you would just commit to getting up a half hour earlier every morning and walking 95% of your problems would go away". They were not so politely fired! Some of the docs ran the tests they could think of to rule things out and when they were out of ideas in their own specialty, they were honest and sent me on to another specialty. The rest just clearly weren't going to put in any extra effort into figuring it out so I moved on. Many of those 32 docs were specialists like a neuro-opthamalagist. My geneticist sent me to her as there are some visual disturbances I experience that no one can explain and she was hoping that if it was something rare, someone so specialized would recognize it. It turns out the weird visual stuff is probably from the structural issues in my neck. So a lot of the docs were one hit wonders to rule out rare diseases. My current cardio was the one I found after the guy who told me to get up and walk a half hour every morning. I found her by calling my pcp, telling him what happened with the other guy and then asking him to refer me tothe pcardio he would want his wife and daughter to see. That helped get a better name. Once I was diagnosed with pots by this cardio, a regular neuro I had been seeing said I needed to go to my pots neuro. Once I researched and found that I thought that eds and mcas were often an underlying cause and that I fit the symptoms, that allowed me to start seeking doctors that knew about these issues.

[LastUnicornLady]

Well, I guess it depends on what you call "medication trial". One doc I went to told me it was "normal fainting" (is there such a thing???) due to a family history of vasovagal syncope, and told me to take salt-tabs and drink lots of water. We weren't very satisfied with this, because we know the difference between what's normal for our family and what I was experiencing. After seeing a different doc, I was diagnosed with POTS before being put on Florinef. Neither of the doctors I've seen have even mentioned there being subtypes, much less actually telling me which one I am. In fact, the only two medications they've been willing to try are Florinef and Midodrine...