yogini

Yes, they can definitely change over time or it could be high BP causing all the symptoms. I am surprised your dr is giving you another med to lower BP rather than reducing your Florinef dose.

I know 3 months of this seems like an eternity, but that actually isn't vey long in the POTS world. Sme of these medicines take several weeks to work and there is a lot of trial and error. Most people with POTS see improvement and its very individual. Reading articles can be scary. Mainly a dr (and time) will tell if it actually applies to you.

How old is your newborn? The first thing I thought of was postpartum depression, which someone else posted about. Also, POTS can be worse post-pregnancy - you lose blood volume, plus a lot of hormonal changes. Hang in there. Hope you get some help and feel better soon.

For a while when I got POTS, all I did was work 4 days/week, then literally came home and slept the rest of the time. In my mind I became "functional" again when I started feeling comfortable handling multiple normal things a week - shopping, cooking, cleaning, movies, restaurants, laundry. Highly functional was the point that I didn't have to plan every single thing I did around POTS, rest, etc. I would guess that your dr thinks you can get back to normal someday. I hope she has you on a treatment plan, because that can help speed up the recovery

This was one of my worst symptoms for years. It sounds like you are trying all the logical steps. Paxil has helped me the most with lightheadedness, but I think Prozac is similar. When you say you wear compression socks, do you just wear knee high? Maybe it would help to wear full hose and abdominal compression? Your BP is quite low for being on .2mg florinef, let alone midodrine PLUS Prozac. If you don't have POTS, what about trying caffeine? It increases both BP and HR, which makes it harder for those of us that have POTS. If you don't have POTS, then it may help. I agree with canary on exercise. I feel so much better from yoga. It's been a lifesaver. If you can't manage that, maybe some stretching exercises?

For me I think it's the other way around. When my POTS is acting up, I get a really bad headache.

I would mention this to your dr and/or do research on conditions with extreme thirst. Could be that something else is off in your system other than POTS. Could be electrolytes, kidneys, or another condition like diabetes insipidus

Definitely go for it. For many of us, our bodies kick in to high gear to get us thru events like this. I would take the train, taxi, stay in a hotel or do whatever to make it easier, more comfortable. Load up on water, take extra meds,etc so you are prepared. let us know how it goes!!!! So exciting!

Even if you are hypovolemic, there is such a thing as too much water. If you drink water then go to the bathroom, you could lose electrolytes with the water, which can wreak all kinds of havoc on your body. I've heard 2-3 liters as a rule of thumb, but it really does depend on you and what particular condition(s) you have. I think it is a good idea to talk to your dr.

By the way, in reading about benedryl, i was surprised to learn it CAN be addictive. I read on a medical site that it is not recommended to take for "more than a few weeks" because you can become dependent and need more and more of it to work. I also says when taken over the long run it can impair cognitive function. I take it rarely so am not worried. Consult your dr, but in the grand scheme of things to me it isn't so bad, especially compared to prescription sleep meds.

I would think that the antidepressant is being prescribed to treat POTS, and benedryl is just for sleep. I take Paxil every day. it is my only med and a huge help. Your daughter may need both a POTS med NDA something to help with sleep.

Are you going for testing? Like a tilt table test? Electrophysiologists specialize in heart rhythm. If your cardio doesn't know what to do, maybe he is hoping that the EP will better know how to treat you. He probably also wants to rule out other conditions. Try to keep an open mind.

I would be curious to know what the side effects are? Benedryl has been around forever and is non-addictive. I thought it was generally safe. Of course it is better not to take any medicine unless you really need. You can search old posts about sleep. There are lots of different things that work for different people. Melatonin is one. I alternate between ambien, benedryl and being able to sleep on my own. I wear a mask to keep out the light and listen to Delta Sleep System, an album that helps me fall asleep. It works other than on the worst days.

SSRIs work for me and many others. Many others tried them and had no luck. It is a bit of a roll of the dice with any treatment. You have to try and see how it goes.

I am happy with my current dr. He is not a POTS specialist, but is surprisingly knowledgeable and willing to work with me and my suggestions. PM me if you want details

Do you have low or lower BP? At first I didn't beleive that salt worked for me. But I got into the routine of drinking broth 2x day and when I did, I felt much better. You really have to stick to some kind of routine and make sure you are getting enough salt, both of which are hard to do.

This season is a really bad flu/cold season so people in general are fretting sick and that includes all of us. I don't think POTS weakens the immune system. Like Angela, mine seems nprmal. In fact, some seem to have an autoimmune component to their POTS where the immune system is attacking things in the body it shouldn't - which is sort of like the immune system being in overdrive rather than being weak.

Great! And that is really interesting that 2 other people in your school have POTS...

You may want to do a search for Dr. Kaufmann on the forum - you will see the feedback from others who have seen him.

Is your BP really low to start off with? I think it's common to have symptoms lying down for all types of dysautonomia. Dysautonomia means that the body has trouble controlloing HR and/or BP. This could be in any position, although worst for most of us when upright.

I know POTS patients are less likely to faint than NCS patients. Could this be what they mean by perfusion being maintained?

Yes, it helps - there could numerous reasons. The body works more efficiently when you are in alignment. Also, you can breathe better in this position - slouching closes off you lungs. Of course, as you mentioned, squeezing the core helps with BP. in my own case In addition of all of this i think I am putting pressure on nerves in my neck and or shoulders which contributes to or causes my POTS.

Altruism, we are all so different. We rely on other patients for information because our doctors don't know a lot. However, for something like this, I would only believe it if it were in a medical article or from another source with citations. You'll note on the Dinet page everything is cited and that is for a reason. Anything else is just someone's opinion and people who aren't doctors (myself included) won't get it exactly right. It seems like the person who wrote this is trying to be helpful, but not sure how they came up with this. I would assume it ISN'T true unless you find another article on this!

Rachel, if you are in a different state now, the rules and benefits might be different....even though Medicare is a federal program. Confusing, I know! I hope you are able to find a way to get the home IVs.

Is this from a medical article or from a patient website? I would rely only on information cited to a medical author. I have not heard about this ComboPOTS as a medical classification. However, there are all sorts of variations of symptoms here on Dinet. I don't think your treatment or prognosis would be any different than the rest of us.