SpinnyC

Thanks so much for your feedback IceLizard. It's interesting to hear from someone with Pots and EDS. And someone who's been dealing with Pots for quite a number of years as well. It sounds like everything Dr. G did for you are things I've already tried or things I already know (like getting the EDS diagnosis). I've been working with a exercise physiologist for a few years and that helped a lot. Dallas would be way too far for me (especially if the Dr. doesn't want to work with locals for followups) but I like how precise and thorough your appointment sounded. I just really don't want to go all the way to Toledo, spend money I don't really have to spend, and get my hopes up- only hear things I've already heard or tried. I'm not expecting a miracle cure... but any advancement I could make would be worth it. Having a doctor that would consider the big picture and is knowledgable would be fantastic. Right now I feel like the only doctors who care about the big picture know as much or less than I do and sometimes I'm educating them. More than anything i just don't want to go there and be disappointed. And to know that just because I've seen other Pots specialists doesn't mean there's nothing left to gain.

Thanks Bigskyfam

If you've been to Toledo to see the world famous specialist I'd love to hear what you think... I've been around the block with other Pots specialists. It's been years... I've tried Midodrine, Florinef, and Mestinon. All things to raise my BP (which is low when at rest and gets higher when I stand). I'm on a high salt and fluid diet. And do rehab exercise regularly. Over the years my symptoms have gone up and down. I've also been diagnosed with MCAS and EDS. No specialist has ever told me what kind of Pots I have or what they think caused it. I feel like my currant specialist isn't really that involved and disregards a lot of what I say (especially when it comes to medicine side effects). Almost all my doctors have blinders on- never thinking about the big picture. The EDS person never considers Pots, the Pots person never considers EDS or MCAS. I've had tilt tables, qsart, and breathing tests but never had a sweat test or catecholamine testing. I'm hesitant to make the 2 day trip to Toledo because I'm not sure I'll hear anything I haven't heard before. My insurance won't cover the trip, and since I can't work money is a huge consideration. Any advice or experiences would be appreciated. I'm also wondering about the cost of an initial visit. And if tests are needed can I get them done at home?

I've wondered about this too. Maybe it's a case of something within the mutated gene being "turned on". Or a function of age and changes within the body. I know someone who has a birth defect with their heart that didn't show any symptoms until they were in their late 30's early 40's. It was explained to them that symptoms don't show up sooner because a younger circulatory system compensates for the defect better than an older one.

I've been thinking a lot about pregnancy and pots lately. How did those of you who've had children deal with vomiting- Did it make your Pots a lot worse? I know if I get sick now my symptoms go crazy. How would you have classified your symptoms before pregnancy? Were you all in a place where you felt your symptoms were well controlled and didn't limit you much. Also, how was it after the baby- were your symptoms much worse due to things like lack of sleep and loosing that extra blood volume?

I had unexplained weightloss and I know I can sweat, it's just diminished. And if I do I just feel miserable because it takes so much effort to get there. Have you had a tilt table test? That's one of the main tests they use for Pots. I see both a cardiologist and a neurologist. The neuro specializes in Pots.

I actually bypassed my family doc and called my cardiologist. I guess it all depends on the relationship you have with your doc. For me my pcp just doesn't get the dysautonomia stuff but my cardio has always been great.

So far I'm ok on antibiotics but my sister has a terrible time- full blown hives. I've always needed prednisone for respiratory stuff but mine hasn't been bacterial it's been viral.

I'm planning on it. I already told the doc when I was being released how amazing he was an how appreciative I was of his approach. He looked a bit stunned to hear it isn't always such an open-minded reception. He said this wasn't something docs encounter everyday and didn't understand how you could be anything but open minded.

Welcome to the forum. Those symptoms all sound familiar to me. It took me about a year and a half to get the pots diagnosis. I saw two neurologists who all said I was normal before my cardiologist got me an appointment with a pots specialist. It can be frustrating when doctors don't get it- I had one flat out tell me it was in my head and another suggest it as a possibility. I think doctors forget that feeling this sick and having no answers can itself be anxiety producing. It's not the cause of the symptoms but rather the result.

I forgot- they also treated my high temp with Tylenol. Monitored my vitals every few hours and kept me on my ant-histamines and b12 (to help autonomic regulation).

Thanks- it's always awful to get sick like this with Pots. To answer some of your questions tanner. Within the first hour of being sick my resting (laying down) heart rate was in the high 140's. I did have chest pain when it would get over 130's. I would feel faint even just sitting up sometimes. My bp was fluctuating high and low when I first got there. It was so important that my doctor called the ER. Doctors take other doctors more seriously. No one in the ER really had a good idea what Pots or mast cell activation were but a few had looked up info because my doc had called a head. After three bags of iv fluids and three rounds of nausea meds I was still getting sick and my heart rate was still in the 120- 130's resting so I was admitted. Initially the ER admitted me to the general unit but they can't monitor your heart rate. When I saw the hospital doc I asked about being monitored. He listened to how fast a rate it was, talked with me about it and I was transferred to the cardiac unit shortly after so they could monitor my heart rate. A perfect example of him listening to what I had to say and taking it into account. My bp dropped pretty low despite being on iv fluids the entire time I was there. I also had to have iv potassium because those levels dropped pretty low. I was in for two days. They would have kept me another day but the doctor left it up to me. My resting heart rate was better, other labs had regulated but I was still very nauseous and needing to use the bathroom a lot. He said only I would know if I could keep up with fluid intake once off the iv. I opted to go home because I really wanted to go but if I'm being honest I probably should have stayed one more night. The first night home was a bit rocky.

So often trips to the hospital can be horrible for people with Pots, I thought I'd post about a good experience. After Christmas I came down with a horrible stomach virus. As soon as I got sick my heart rate jumped way up and I knew I was in trouble. My doctor said to go to the E.R. and called ahead to explain to them why I was coming. When I got there they took me right back to a room and started an iv and some anti nausea meds. After almost a whole night my heart rate still couldn't be controlled and I was still loosing fluids so the admitted me. Once admitted the doctor I had in the hospital was fantastic. He asked me questions about Pots, Mcas, and Eds. Was honest about what he knew and more importantly what he didn't. He valued my opinion when considering a course of action for my care, took my many allergies seriously, and made accommodations for me when needed. The entire medical team that oversaw my care were great (except for one nurse who called me "one of those patients" and commented on how young I was- to suggest I wasn't really so sick. But even her attitude improved after talking with the doctor). I still feel bad- but I can honestly say I'd be feeling a lot worse if it wasn't for the amazing job the hospital team did.

Thanks Ramakentesh, lots to think about. I've often wondered why meds that increase my bp make me feel better too, even though my bp raises on standing.

Thanks everyone! Good to know that many of you experience similar symptoms despite a high bp reading. Tachyfor50years, those links were helpful.

Allergy. But definitely see someone who works with mast cell issues because all your tests can come back normal but you can still have mast cell activation syndrome.

Thanks Ramakentesh. Good to know this. I was in a clinical setting and when I said I was having pre-syncope I got a funny look and was told that it couldn't be from bp because it wasn't low. I felt like saying- well I know what I feel, despite what the cuff says.

Interesting Racer- I know I get blood pooling in both arms and legs. I always take my bp in the same spot, but never thought that although the reading in my arm is high I may still not be getting enough blood to the brain. I do have Pots. I usually have an increase in bp when standing. Sometimes my bp starts out very low so the increase still isn't enough to keep me upright. Other times I have a normal bp at rest, and the increase when I'm doing an activity is enough to put me into hypertension territory. I can feel pre-syncope symptoms under both those circumstances.

I've been wondering about this for a while and I'm hoping someone might have an explanation. I get both low and high bp. There are times when standing I have fainted or will be close to fainting and it's clear my BP is low. But there are other times where I feel very unsteady and get the pre-syncope warnings but my BP is high. Does anyone know why you would feel faint but have a perfectly fine- actually high BP? Maybe it's just that I feel so unsteady/dizzy and it feels so similar to when I've actually fainted that my mind has linked the two sensations- because either way it means I need to sit down. Anyone else experience this?

You can ask your PCP for a letter excusing you. But frankly, in my opinion, syncope should definitely be more than enough of a reason for your cardiologist to write the letter. Not trying to tell you what to do or anything but if it was me I'd take it as a big sign that this doctor doesn't understand you, your symptoms, or your condition. GIven this experience and the office visit vibe- if it was me I'd find a new doctor asap.

Typically I can feel the dose wearing off after about 3- 3 1/2 hours. The last pill of the day was the worst- that one was like taking a nose-dive. After a while I got used to it and it wasn't so bad... but my system seems to adjust to Midodrine in general. I can only be on a certain dose for so long before it becomes less effective and needs to be increased for me to continue seeing the same benefits.

Thanks for this. What I've read seems to say that one or both may either work too much or not as well because they may not be cleared by the kidneys as they should. But it's only a theoretical possibility at this point because no interactions have ever been reported by physicians or patients. I was prescribed both by two different doctors. When I went on the Ranitidine I was told it was fine with midodrine, but still it'd be interesting to see what a doc would say about that specific interaction information.

That's really interesting! Do you have a link for where you read that? I'm on both and have been feeling like the Midodrine isn't really doing anything anymore. But In the past I've also seemed to build up a tollerance for Midodrine so I thought it was just time to up the dose again.

Bren, sounds like you do have a great internist. Wonderful to have that doctor act as the coordinator. Katybug, very interesting that Raynaud's is common. I wonder about Erythromelalgia.

The other thing to consider is how much of H1's and H2's you are taking. Very early on (before my Pots diagnosis) I suspected allergic reactions had something to do with all these weird new symptoms I was having. I was tried on a 24 antihistamine and a tryptase test was done. It was in the normal range and I didn't respond to antihistamines so I was told allergies had nothing to do with it and was sent on my way. But I kept having weird reactions and it was through reading about Pots that I saw information on Mcas and it seemed to fit. When I finally got to an allergist who dealt with Mast cell disorders he said that it didn't matter that I hadn't responded to the antihistamine that was tried because I wasn't on nearly enough to make a dent (I'm now on triple the dose that first allergist tried) and I wasn't on an H2. He also said not all histamines work the same on everyone so there could be some trial and error on the kind of antihistamines that worked best for me (I think I'm on my third different H1).