Pistol

@gossamer4448 - in my case I used to have insurance that would not cover out-of-state specialists, but since there is no one that is specialized in dysautonomia in my state they allowed me to go out-of-state and covered the visits b/c there was no one on their plan. Some times insurances will add doctors to their net work. Call the insurance and ask for a case manager, they can help you finding a proper specialist or may add someone out-of-network.

So - if they are a cross between kale and brussel sprouts - that means not only do they taste horrible but to top that they also give you gas????

Is this forum not like a chat room?

I used to have swollen stiff fingers in the morning, had to take my wedding band off permanently. Also I had swelling in my ankles in the pm. Since I started weekly IV fluids the swelling went away and I have lost several pounds of water e=weight.

@Hutch - I hear you!!! I had a TTT done by an EP who said that I am hysterical, that I need to stop taking my BP so much and stop the BB because I am completely healthy. My PCP had told me I am not allowed to drive due to seizures and syncope but the EP said to go ahead and drive, it's all in my head. Later the autonomic soecialist determined that the so-called normal TTT was clearly positive for POTS b/c my HR went up to 130's the whole time. So - EP does not mean they understand dysautonomia. And I agree - why do an EP study before a TTT? Good for you to not go through with his recommendations. I hope the neurologist will come up with some answers for you.

@potsiebarbie - many people with POTS have low BP and take BB or meds to bring the BP up. This cardiologist is wrong - there is a lot that can be done about the symptoms, several meds have been proven to relieve symptoms. But it takes time to find the right one for YOU - that is very frustrating and many docs do not want to deal with that. Most likely because they can't just say " take this and call me in a month ". I agree with @Hutch - a good PCP can be more valuable than a bad cardiologist. In my case my PCP has been with me since onset of POTS 9 years ago and watched as I fired 5 cardiologists and one autonomic specialist. He just listened to my research and went along with trying meds and also referred me to my current specialist. Between the two of them and the latest addition of a local cardiologist ( who also is open to treating POTS ) I am in a good place. They all work together for me. But in the end it was my PCP who stood by me through thick and thin.

I am not diabetic but suffer from hypoglycemia caused by POTS. When my sugar drops I eat something high in fructose ( like grapes ) and - very important - a protein ( like cheese ). The fructose or glucose will bring the blood sugar up fast and the protein will keep it from dropping again. I have to avoid all sugars in the morning or I get hypoglycemic one hour after breakfast ( you mentioned you had juice ). I eat whole wheat bread with cheese every morning - if I eat cereal or juice or anything sweet I get hypoglycemic.

@Watermama - it is not just in the UK that doctors are dismissive and ignorant towards dysautonomia. I live in the US and despite being treated by a renowned autonomic specialist and having recommendations from cardiologist and PCP to give IV fluids for POTS flares - anytime I had to go to ER or be admitted to hospital in severe POTS flare with hypertension and seizures or syncope they would not take it serious and have even denied IV fluids -- stating that if I can drink I do not need IV fluids. This being despite the fact that the immediate improvement from IV fluids is all documented in my medical record. Doctors do not want to hear about it b/c dysautonomia requires them to change their thinking … I am sorry that you are having such a bad time but if it is any consolation .. please know that you are not alone. Most of us have been in your shoes - if there is any doctor you know that is open to listening to you - just stick with that doc!!!! Best of luck, you may want to - hydrate, increase salt intake, rest and - once you are starting to feel better - start mild exercises. What I have found is this: DO NOT STAY IN BED - no matter what!!! Bedrest makes us worse!!!!!

What I have done is call the major hospitals in that state and ask for doctors that are familiar with dysautonomia ( cardiologists more often than neurologists in my experience ). You can also ask your daughters cardiologist if he can recommend someone - sometimes they will take the time to do that.

I know from experience that any illness and the accompanying inactivity makes my POTS much worse, and yes - it makes my BP go up as well. For me it is always extremely important to go back to exercising as soon as I can, although I always have to start all over again with a few exercises daily and then go slowly back up to my usual abilities. Do not overdo it or it can back fire!!!!

Depending on your insurance they may provide transportation, I know that Medicaid does in some states. Otherwise call a cab or ask a family member or neighbor to drive you. You can also hire someone to take you to the doctor if you do not have public transportation where you live.

@CuriousThinker - often our bodies need a little time to adjust to new meds. Some side effects can happen in the beginning and resolve once the body gets used to it. I also took Mestinon for a while but I don't think I had bad side effects, it just did not work for me. NEVER change taking a med as prescribed by your physician, as @WinterSown stated. Give it some time and discuss any concerns with your physician.

I agree with @Bluebonnet08 - in my case as well LR is better tolerated than NSS. With NSS I have fluid retention whereas with LR I actually LOOSE fluid weight during the infusion, lasting several days.

I am not sure if you are male or female or what age you are but sometimes this can happen with menopause.

I do get pain in my legs when I am in a flare and bed ridden. I do exercises every day to avoid them.

I personally would not go unless I have a wheel chair and only be outside when it is not as hot ( like early morning or late evening ). IF I were to go to Disney ( which I am not able to due to POTS ) I would probably stay in the hotel while my family goes to the park and enjoy the activities like dinner etc in the evenings.

@CarolS - yes, in my case the BP goes UP with standing and anything that causes a flare. It sounds like from what you are reporting your daughter has the type of POTS that causes vasodilation and therefore might respond better to meds that CONSTRICT. Glad she is doing better on the Ivabradine.

In my case - I have hyperadrenergic POTS - in response to blood pooling the ANS dumps out too much Norepinephrine and the blood vessels constrict TOO MUCH resulting in POTS symptoms. In that case medications that vasoconstrict make symptoms worse ( as do compression stockings ), but vasodilators ( contra-indicated for many POTS patients ) improve symptoms. That is why it is essential to differentiate between the different mechansisms of POTS.

1) I started with POTS symptoms ( including syncope and hypertension ) 9 years ago. No known trigger. I have hyperadrenergic POTS and NCS. 2) Most symptoms have improved with medication but extreme limitations in daily living remain necessary. 3) Mostly housebound, do not drive due to syncope/ seizures, wheel chair for transport, cannot do shopping or activities other than doctor appointments for the most part, walking no more than 200 feet. Can do mild house work, limited in cooking or other activities that require standing. Become bed bound if overdoing things. Great improvement since receiving weekly IV fluids. 4) Since receiving weekly infusions BP and HR are mostly within normal limits. Prior to IV fluids BP between 100/60 - 150/100. HR 55 - 100 on medication.

They may put her in an epilepsy-monitoring-unit for a few days to investigate. I take autonomic seizures and was in one for a few days - it's essentially a long-term EEG and heart monitor. I am glad this cardiologist came up with that idea - this new direction might bring answers? I hope so.

@Derek1987 Have you read the policy? There should be info regarding what they require in ways of restrictions. You should be able to get it online if you do not have the policy. It does sound like they are looking for ways to not pay out - if that is the case the policy might give a clue. Also - you can file a grievance with the insurance company so they have to review your case and respond with a detailed explanation why they do not accept the restrictions outlined by your doctor. --- Sometimes the insurance wants documentation from your employer that they can not accommodate your restrictions and that is why you cannot work ( i.e. they cannot give you a desk job until your February appointment ).

I had several surgeries since being diagnosed with POTS and always the anesthesia department was well aware of the special considerations of POTS patients for anesthesia. I did have several surgeries where there were problems ( seizures, hypotension, hypertension, tachycardia …) but they were always able to get things under control. As long as they know about your POTS they should know what to expect.

Dear @Derek1987 - I have fainted too many times to count and know how scary it can be. But except for the potential injuries you can aquire from falls syncope in itself is not dangerous. In the common faint ( which they used to call NCS ) there is rapid and complete recovery so - other than a little grogginess - there should not be any lingering effects. Syncope is caused by a temporary loss of blood flow to the brain and is not dangerous as in doing brain damage b/c it is such a short event. However - what LEADS to syncope can be dangerous, like asystole or arrhythmias. In NCS the cause is dysautonomia and is not life-threatening. But it can be controlled and improved in many cases. Have you tried counter-maneuvers? Orthostatic exercises? --- Unfortunately many of us have to live with the fainting and have to adjust our lives around the spells. And - as you are already doing - lie down when you feel it coming on so you don't fall and get hurt. This can be embarrassing - especially in a public place. When I was still able to go to stores I would only go to Walmart b/c I knew where all the benches and bathrooms were and strategically plan my shopping around the store's layout!!! Today I go in a wheel chair, so I no longer have to worry about that. And my husband does the check-out lane. --- I am sorry that you have to live with these episodes and I know how hard it is to live with the uncertainty of how this will all affect your future. But be positive - there is hope. It ís possible to get control over your symptoms . -- BTW there is a great article on the main page under study results about physical counter maneuvers for NCS - that may be helpful for you. Best of luck!!!!!!

@KingConnection - still doing great. Had a little flare from standing too much 10 days ago and had to be down for 2 days. I got my fluids earlier in the week to treat this and -- brand new!! All the symptoms went away and I could be active again. Still no episodes or syncope - nearing 4 months!!!

I am not so sure that antibiotics affect your BP but any infection can. So - if you have an infection and you take antibiotics your BP may be affected due to the infection.