First of all so sorry you are going through this. It is frustrating to not feel well and not to have any answers when so much seems to be happening.
Have you had a tilt table test? It was one of the first tests that helped define my orthostatic hypotension and autonomic dysfunction. I found out more when I went to mayo Arizona and had more testing done.
As for doctors who treat Pots I looked at your location and then checked the list of physician's listed on the dinet site. There is one listed in NJ. You can go to this location to check the address. I do hope you get some answers soon. Marie
Thanks so much for your help. I have never had a tilt table test as my dr feels my fainting and dizziness are " stress related". She feels that I need to see a therapist to have this evaluated. I am at a loss on what to do next. I just want to feel well again.
I saw my PCP again last week. She feel I have orthostatic hypotension. She advised me to increase fluids and salt in my diet. She also started me on Florinef 0.1mg 3 times a week. I have been taking this since last week- I still feel very dizzy and my heart rate increases as I stand for a short period of time. Should I be feeling any better yet- Does the dosage need to be higher ? I appreciate any help or guidance.
I don't know if the same is true for Florinef as for Midodrine, but my sibling recently started Midodrine and was told it may be about three weeks before the medication really starts to take effect. Ask a pharmacist how long Florinef takes to truly start taking effect in full. If you find a dysautonomia specialist to be too far away, try and find a local cardiologist who has patients with orthostatic intolerance that they treat on a regular basis.
Did your doctor do an iron panel, check your cortisol level, check your potassium level (low potassium can cause leg muscle cramps, but I'm guessing they checked that since you mentioned low sodium, which is typically part of the same blood panel), check your circulation in your legs with a doppler study (poor circulation can cause ischemic pain in the lower extremities)?
Thanks so much for your advice. I had my potassium checked- K 4.1. My dr did a CBC which was the best it has been in awhile. I had my cortisol level checked last month- Cortisol 18 (3-19) so that is fine also. I have never had any doppler studies done. It has been very hard to find a dr who even listened to my symptoms. I have had low blood pressure and low normal sodium for over a year and this new PCP is the first dr who ever checked my BP sitting and standing and noticed that my BP dropped a little when I stood up and my heart rate was raised as I stood.
She started my on Florinef 3 times a week on Sept 25th and raised me to Florinef .1 every morning on Oct 4th. I still feel very lightheaded weak esp on standing. I was told it takes a few weeks to feel any change. I am drinking lots of fluids and salting my meals. I just want to start to feel better.
I have had a normal CBC, yet my iron was low and I think it made me more tired and short of breath than I would have been otherwise, so I recommend you ask your doctor for an iron panel- ferritin, T.I.B.C. (total iron binding capacity), iron saturation percentage, blood iron level, and transferrin. Your light-headedness warrants an iron panel in my opinion. Have you gotten an echocardiogram done?
Other things to do- get some compression stockings and pump the muscles of your legs when you stand to try to pump the blood back up to keep it from pooling in your legs, which can often happen in those with orthostatic intolerance.
Sit on the edge of your bed for about a minute before attempting to slowly stand after you've been lying down for a while. If you still feel light-headed, keep a glass of water at your bedside and drink a whole glass of it before you attempt to stand.
Use a shower chair and either use luke-warm/tepid water and put your shampoo, soap and towel where you won't have to raise your arm up to grab them. If you choose to use hot water and it doesn't make you feel too faint, be sure and sit for several minutes afterward before attempting to stand.
Avoid eating large amounts of carbs or sugar in a meal and avoid very large meals. Or if you eat these things, plan on not getting up and moving about for at least about a couple hours afterward.
Thanks so much for the helpful hints. I really appreciate it. I had an echo last year and the cardiologist told me my heart was fine. My EKGs have all been fine also. I will request an iron panel when I see the dr next week.
I feel so frustrated as I have been complaining of these symptoms since last summer and I have finally just found a dr who took my low bp seriously. She raised my Florinef to 0.1mg each day last week so I hope this will start to help me feel better as I continue to increase fluids and salt.
I hope you start to feel better too! And I'm glad you have at last found a doctor willing to take your blood pressure seriously!
Hi I had an appointment with a cardiologist and he diagnosed POTS. I continue to take Florinef 0.2mg and he started me on Midodrine 10 mg TID and Proponalol 10 mg TID last Monday. Honestly, I feel almost worse now on the meds . My blood pressure has come up to 112/72 which is an improvement for me. My body feels so fatigued and my arms and legs are so achy. I also have had terrible insomnia which is new for me.
I have an iron panel done which was all normal. I also had an echo done last week which was also normal. The cardiologist feels I should be feeling better but I do not. I am so scared that I will not get better and continue to suffer.
Why is the doctor giving you all three of the kinds of treatment they usually would try ONE AT A TIME to try to find which one is effective for a patient with P.O.T.S.? It doesn't sound right to me he is trying all three approaches simultaneously. If it was advised to add something because the Florinef was helping but not enough, I DO NOT understand adding proponalol to the mix at the same time you are adding midodrine.
I'd recommend seeing another cardiologist as soon as possible to see about making an adjustment to your medication regime because feeling worse is not the goal and you need to consider your health. Before you go, look up the medicines you are taking or discuss them with your pharmacist to see if you might be having some common side effects and which ones might be causing them if you are.
Are you avoiding taking the midodrine after 6 PM? It can potentially cause high blood pressure while you sleep and it is recommended to take your doses with your waking hours in mind.
I know when I was taking a blood pressure medication they tried for my dysautonomia, my legs felt all jelly-like and I think I had some tingling in my feet.
The Florinef I believe is basically a steroid treatment.
How did the cardiologist come to the diagnosis of P.O.T.S.? Did he do any tests to arrive at that diagnosis?
My cardiologist says he has treated many patients with POTS, as has the other drs in his practice ,and this is the regimen he has found that has worked for them. He did the lying,sitting, and standing BPs and found that my HR raised to 122 when I stood up for a few minutes. He did an EKG and echo and found my heart to be fine.
I checked with the pharmacist and she is not sure if the meds would cause these side effects and said the dr feels these are the best meds for you to take for your condition.
I have felt a little better the past few days- much less lightheaded and I have slept better. I hope this means I am adjusting to the meds. I would love the leg achiness to go away. I hope I will continue to feel so more relief. Thanks for your helpful words.
I've been posting on dysautonomia forums for years now and my sibling who only this year was diagnosed with P.O.T.S. (I was diagnosed with it back in 2004) has a doctor whose policy is to try each drug in turn if the first one or second one do not work out. (The same method was done for me early on by people trying to treat me, though they were tried in a different order than he likes to.) I have not seen anyone else posting that they are taking all three varieties of drugs for their P.O.T.S. simultaneously.
I still would recommend another opinion on taking all three at the same time- one outside the medical center where your current cardiologist is. Where are you going to go if you are taking all three therapies and your body grows immune to them all? What would you try next? Also, since he started you on two at the same time, it makes it more difficult to pin down which one you might be having the unpleasant effects from. I had a neurologist who tried things one at a time for my migraines thinking of side effects- I think that was a smart move so we would know which drug was causing a problem or not.
It sounds like the pharmacist was not particularly helpful to you and did not bother to use her references to look up side effects for you. I have a Nursing drug handbook, though it is likely not as thorough as what she would have access to as a pharmacist.
My nursing drug handbook from 2008 lets me know:
For midodrine, pain in general is listed as an uncommon side effect, though parasthesia (which would affect your extremities with feelings like tingling and burning potentially) is a common side effect.
The Florinef does not list extremity pain or insomnia as symptoms.
The propranolol hydrochloride does list insomnia as a side effect that is uncommon. However, it IS a potential side effect and is a possibility to consider in regards to your trouble sleeping. Fatigue is listed as a common side effect.
Thanks for all your help and advice. Unfortunately, I am financially unable to see any other drs at this point. I have been feeling ill for over a year and a half and have seen countless drs. This cardiologist is the first who even looked at my low b/p and tachycardia so I am stuck trying this regimen for now. All I can do is hope that this is truly POTS and I will start to feel better.
If you continue to have the insomnia and have days where you feel like you might be worse off now than without medicine, you can always call and tell the cardiologist you do have that you would like to discontinue the propranolol (since it lists insomnia as a possible side effect) to see if that helps you to feel better and for their advice about how to discontinue it.
If the cardiologist cares about you as a patient, he will be sympathetic to how you are feeling and be willing to adjust. If he has another idea on adjusting so you might feel better, hopefully he will suggest it. I had a cardiologist who felt I would be better off not taking anything with my P.O.T.S.. With my own experience with medications for it, it has seemed that guy was right. However, my sibling is benefiting from midodrine and I'm glad!
Your heart rate if it was 91 or lower before you stood up did meet the criteria for a P.O.T.S. diagnosis, provided you weren't having a panic attack, weren't suffering from dehydration or perhaps a bad case of iron deficiency anemia, etc.. at the time.
I hope you will feel better!
I will be seeing him tomorrow so I hope to discuss the symptoms I am having and finding some relief. He is very sympathetic and has experience treating patients with POTS effectively so I hope I will be one too.
I am curious- How do you treat your POTS and do you find yourself feeling well? Thanks so much for all your help.
I feel blessed to try to help!
That's a blessing to have a sympathetic doctor!
I don't do much to treat my P.O.T.S.- mostly have made lifestyle adjustments- like using a shower chair, not popping right up out of bed, not doing much after eating my main meal typically (sit around awhile), etc.. Also, I occasionally eat extra salt when I feel a certain way and when my urine looks very dilute. I feel like there are definitely abnormal things happening but have been living with it for years now.
I saw the cardiologist last night. He lowered my Florinef to .1mg as I have had a headache the past few days. My blood pressure is better- 118/70 which is a great improvement for me. I still feel achy and a little dizzy but he hopes that subsides soon as I have only been on the meds for 2 weeks.
Thaks for your advice. It helps to talk to someone who understands.
You're welcome and I'm glad he adjusted your Florinef. That blood pressure looks very nice. It does take I think at least three weeks for midodrine to fully kick in (my sibling is still taking that one).
I tried both Florinef and midodrine but not long at all because of side effects. I think maybe the Florinef gave me a headache and I had chest pains increase with midodrine. I have seen that others on this board are sensitive to medication and it might be that you have some of that too.
I took propanolol long before I was ever diagnosed with P.O.T.S. for migraine prevention, but had to quit because I started wheezing while I was on it. When I look at its action, I can somewhat see how it would apply to P.O.T.S. except when it comes to the reason why your catecholamines are kicking in- to keep from passing out. If the propanolol is blocking the catecholamine action, it counteracts your body's own mechanism to try to raise your blood pressure it seems to me from the description, though it also does the positive of reducing oxygen demand of the heart, etc.. I'd be interested to hear your doctor's explanation as to why that one is good for someone with P.O.T.S..