Pistol

@Knellie - assuming you have a PCP you can go to him/her, explain your symptoms and what you have found out about CSF leaks, and how your symptoms are in line with CSF leaks. Then ask him/her to refer you to a specialist that can diagnose this condition. He then will send a referral request along with a letter requesting to rule out or diagnose CSF leak. Especially after telling your PCP about the bad experience with the ENT he/she might sympathize. Referrals to specialists are the responsibility of PCP's, so it should not eb something you have to fight over.

@Knellie - I am sooo sorry that happened to you! Yes, there are too many ignorant docs out there! I also had to read up on my symptoms and actually diagnosed myself with HPOTS before I got to the specialist ( he confirmed it though, after 5 cardiologists gave me a pat on the head and smiled at me ). Our medical community needs to come out of the caves and realize that they do not have the sole lease on knowledge! If a patient shows up and has done the homework and has legitimate symptoms, but has the audacity to suggest - or ask about - a diagnosis that correlates with these symptoms ... how dare they ! I have found it much more likely that a doc gets his rear-end hurt over this than that he would take us serious. Just get another opinion. The next doc may be better at treating patients! Also - you can always ask your PCP to write a referral letter that directly asks the ENT ( or neurologist or whoever he refers you to ) to rule out CSF leaks based on your symptoms. That way the doc may take you more serious. Again - I am so sorry!

@dancer65 - this is so true! I too get irritable when I over do it - I think it is because of the overactive ANS making too much adrenaline. This causes the vessels to constrict, less blood flow to the brain; brain fog and less ability to respond to multiple stressors at the same time ... when i have to cook with more than one pot on the stove I get so overwhelmed that I will rip the head off of anyone who asks me a questions or interrupts me ... a sure sign that I have to stop! My husband and daughter know this, so they jump in and finish the cooking process for me 💗. A while of resting and "cooling down" and I am good to go again!

@E pots - it is common practice these days to have NP's see patients under the direction of MD's. Nurse Practitioners are allowed to assess, diagnose and prescribe medications. They can refer to the neurologist but otherwise they can work independently. I know many, many NP's that are very capable, and in some cases I prefer the NP over the actual MD 🤫! However - whether you see a MD or a NP, there are always uninformed and ignorant ones. Unfortunately with POTS we more often than not have to contend with health care providers that don't take us serious or don't know how to help us. If you feel a doctor does not listen to you, or does not know anything about dysautonomia, it probably is a good idea to switch. Most EP's have minimal knowledge of POTS, if you are lucky they will diagnose you based on the results of a TTT and then prescribe the ususal - beta blocker, salt. fluids, compression. If that does not help it's all in your head ( easy way to wipe their hands off us! ). Unless you are lucky and find a good one it is usually best to be referred to an autonomic specialist ( see the list of specialists under our physicians tab ). The problem is that it normally takes a long time, up to a year, to get in with a good specialist. This is where I would simply hand him/her a list of all of your symptoms, along with a listing of what a "normal" day looks like for you. For example: stay in bed all day except for bathroom breaks and making food, which is very limited. The symptoms should be addressed one by one ( demand this ). And If he/she does not address this I would ask to see the neurologist. You are already an established patient, so there should be no reason why you would have to wait all that long for that appointment. But most likely it will get the NP to acknowledge your condition.

Do you have anyone who can go to appointments with you, a friend or family member? It is always best to have someone who can jump in when you don;t remember what to say. Also - before every appointment I make a list of symptoms and questions. I keep a note book and throughout the day if a question comes up I write it down. I have a page for every specialist. When the appointment comes I just tear out the page and take it with me. That is the only way I can remember all the things I need to talk about!

Normally you just call your insurance and ask to talk to a case manager. Then you simply ask them whatever question you have. You can appeal that decision. In most long term disability insurances you must be unable to work for at least 6 months, depending on your company. You could request a review and ask for another case worker. There should be instructions on how to go about an appeal in your paper work. I am so sorry - it is hard enough to get through each day, now you have to deal with this! Do you have someone who can help you?

That is a bit difficult to answer, @Elizaangelica. Some people with POTS recover almost completely, whereas others suffer for the rest of their lives. What seems to be an ongoing symptom is orthostatic intolerance. Fatigue also seems to be a symptom that many suffer from, even if HR and bP are controlled. Some people - myself included - are disabled, and Others work, even full time. I think the biggest hurdle for many of us is the anxiety that comes with our symptoms. When at our worst it is easy to think that it will be like that for the rest of our lives. But in very few cases do the symptoms not improve or get worse. I have severe HPOTS and experienced fainting and seizures multiple times a week. Today I rarely get these anymore. This is partly due to my treatments and meds but also because I have learned to listen to my body, to respond to the faintest signals in order to stop the chain reaction of complete chaos. You ask what is "normal" when we have POTS - well, avoiding triggers ( like standing, heat, large gatherings etc), drinking like a sieve and eating salt like it is going out of style, wearing compression hose regardless of fashion or weather, lying on the floor to avoid fainting, using a wheel chair in stores, spending days in bed due to fatigue or flares, not being understood by a majority of people, having myriads of seemingly unrelated symptoms and going to multiple specialists ... and much much more ... this is all common with POTS. So our normal is different from how we lived prior to getting this diagnosis but it does not mean that we have to spend the rest our lives in bed just because we are in a bad flare. Often we may need medications adjusted or changed - the symptoms WILL change over time, but not always for the worse.

@toomanyproblems - I ask myself this all the time. I was afraid of starting Wellbutrin b/c I have high NE levels. But it actually helped me - I don;t get it! I did not have any surges from it - which is what I had feared. Go figure!

@E pots - there are so many treatments and drugs you have not tried yet, and most of us need a combination of drugs, rather than just one pill. Don;t be discouraged - now that they found your bP to run high it opens up a whole new avenue of treatment approach! Most of us had to go through a period of years of trying different meds before we found the right combo. Treating POTS is hard, and frustrating to both patient and physician. Just hang in there and keep going back to the doc until you find relief.

You tell the psychologist the truth, just answer his questions honestly. It is not a pass or fail exam. I was evaluated by a neuro-psychologist twice, and each time she noted in my record that I do not have anxiety but that my physical symptoms are the same as those experienced with anxiety. Don't worry - even if the psychologist finds that you are suffering from some type of anxiety or depression - it may be secondary to your POTS symptoms, they can easily cause both.

Hello @E pots - a case manager at a hospital or insurance company ( here in the US ) is a person thats familiar with your specific case. They usually ask a lot of questions about your situation, diagnoses etc, and then advise you what the ( hospital, insurance etc ) can do for you. An insurance case worker will be a liaison between you and the insurance.

Hello @Elizaangelica - I have HPOTS and was on Guanfacine for years. It helped with high BP and somewhat for ADD, but I only used it in addition to my other heart medications. I only took 1/2 of the lowest dosage pill ( 0.5 mg ). Eventually I had to stop it b/c I no longer needed it, my BP stabilized b/c of IV fluids ( i still take my other BP meds though ). I don;t believe that I personally would take it if my BP was on the low side, like yours. It is a pretty powerful little pill! You might benefit more form Ritalin ( which I also take ), or another ADD med.

I ever only tried Lexapro and Wellbutrin, but I found them to be equally effective for me. And I took the Wellbutrin on top of Lexapro.

@BrookM - this question should be asked of the cardiologist that scheduled the appointments. I know that Midodrine has an exceptional short half-life, so they may just want you to hold it the morning of. Normally they give you literature that tells you what meds - if any - to hold, or they call you with that information prior to the tests. To make sure I would call the office.

There have been several posts regarding this matter in the past, but I wanted to share this finding. Many of us notice flares - or at least worsening of some symptoms - with weather changes or when traveling to places at different elevations than we are used to. I travelled last summer from my home at 3000 feet elevation to the ocean ( obviously at sea level, duh! ), and the minute I stepped out of the car I flared big time, having to stay in the hotel for almost the entire stay. I also experience flares every time the weather changes suddenly from good to bad ( stormy, windy, rain, cold front moving in etc ). During these times I experience severe vasoconstriction leading to cold hands and feet, tachycardia, high BP, brain fog, orthostatic intolerance etc, all seem to improve when better weather comes back. In the summer I cannot ( and most of us can't ) tolerate heat and humidity, I have to stay inside or else pass out. I am so severely affected by temperature changes that i have to adjust some of my meds according to the seasons ( Diltiazem And beta blocker at higher doses in winter, when I suffer more from vasoconstriction ). I have always wondered why that is, since there do not seem to be studies done on this in regards to POTS, although most of us experience the same. So I came across this simple worded article Physical Effects of Barometric Pressure Changes (azcentral.com) that states the following: "When the barometric pressure falls, so does the amount of oxygen in the air. Blood vessels react by dilating or constricting and the sinus cavity often responds to this change with a sinus headache." The article also explains why we experience increases in joint pain and sinus trouble during weather changes. I always was aware of me responding drastically to barometric pressure changes but this article is the first I read that explains why. Makes a lot of sense!!!!!!

Well - for me there was. I would faint or have seizures when HR went above 160 at the same time as my BP went above 150ish/100ish. I could run a HR of 180 without a spike in bP, but could not sustain that rate without eventually fainting. The fainting and seizures appear to work almost like a reset - everything normalizes afterwards. I once was on a holter monitor that recorded 3 hours of HR in the 150's ( eventually this led to fainting ). During this time I was - of course - highly symptomatic. My cardiologist said that although the tachycardia itself is harmless, with prolonged periods of HR's as high as you describe there could eventually develop problems, including heart attacks, simply because the heart cannot sustain rates like that for very long. I believe that that is why many of us faint - the heart cannot adequately circulate blood at those rates. You describe that your HR jumps up to above 200 and then slowly lowers again - that should be less of a problem to your heart muscle than a sustained HR in that range, or even lower. You mention that your HR spikes and then falls - does it remain elevated at all once it drops or does it eventually go back to normal? And does it ONLY get high when your bp drops, or does it ever get high without a drop in BP and then stay there?

@Shercakes - my sister actually just had a long eye exam for this condition from her ophthalmologist and now she has special glasses. Not only have her eye problems improved but she also feels a lot less stressed and her BP has even come down!!!! I am not sure if it is a coincidence ( she changed meds around the same time she started wearing the glasses ) but her POTS symptoms have improved!!!!

@p8d - thanks for the update and link. It's so great to hear that you are feeling better! I truly hope the medications will continue to give you relief!!!!

@Bobannon - there really is no specific number, anything over 120 is considered tachycardia. The diagnostic criteria used most commonly states " increase of 30 BPM or above 120 BPM within 10 minutes of standing" .

Thanks @Platypus - yes, medication hypersensitivity is very common in dysautonomia, and most of us - myself included - have to start on extremely low doses, even half of a pediatric dose.

Huh - pretty much instantly! I run the fist 200 ml of my infusion wide open, and it helps right away. I can give you an example: not too long ago I had overdone things and my port was not accessed ( I need to give it 2 days of rest without a dressing b/c I am allergic to the dressing ). I ended up in bed, barely able to stand, with chills, shivering, ice cold hands and feet, unable to find words or think straight, BP and HR high. the nurse came to access my port and ran the fluids wide open. Within just a few minutes she was amazed to see my color turn from ashen to pink, I could speak and laugh, my feet turned from white and frozen to pink and warm ( you could SEE them releasing the vein spasms ), my HR and BP turned to my usual slightly on the low side and I could get up without even feeling dizzy. I get 2-3 liters a week and use them preventatively, not only to treat the flares. So I rarely get bad anymore, unless I am sick or stressed etc. Prior to the port and home IV fluids I had to be admitted to hospital for overnight fluids more often than I can even remember, every 6-8 weeks for years. I was always on telemetry and the immediate response to the fluids was always caught on monitor, and my vital signs also reflected this in my chart. It baffled many docs who thought drinking fluids was all I needed.

Exercising several times a day can help with that. I use a rowing machine or do mild aerobics. Exercise helps use up some of that penned up nervous energy, I rest until I feel stable, then I exercise depending on my abilities that day and then rest afterwards. In between I do chores, but ONLY to my tolerance. On bad days I simply rest, on good days I am more active, I too don;t feel good when i have to be inactive for too long, but keeping active to tolerance helps with most of my symptoms and prevents the feeling you describe. Also - when I have to stay in bed I stay active with knitting, folding laundry etc - this distracts me from the misery!!!!!!

I take low dose Ativan, o.5 mg, on evenings when I am too worked up to sleep. When I take it 1 hours before bedtime and avoid electronics etc it puts me out like a light, and the next day i might be a bit groggy but no bog deal at all. But I only use it sparingly b/c of it's addictive properties. Another medication my PCP prescribed for me that helps with sleep is the muscle relaxer Cyclobenzaprine. During flares my muscles tighten up from the elevated adrenaline and I get spasms as well as seizures. So 1/2 of a cyclobenzaprine ( Flexeril ) helps a lot on those nights. It is a non-controlled substance, so my PCP has prescribed for insomnia before.

I was tested numerous times for AI disease due to generalized joint pains of unknown origin. All AI tests including extensive work-up by rheumatologist always came up normal except for an elevated ESR ( 54 ). My autonomic specialist ( one of the leading in the field ) states that auto-inflammatory disease ( recently linked to POTS ) cannot be diagnosed with AI testing b/c it involves a different branch of the immune system, the innate immune system. So common AI tests that rheumatologists order will not show it, just as @p8d suggests. BTW - I too have NAFLD and high cholesterol despite a liver-friendly diet and no alcohol!

@Bobannon - 🤗😙☺️ - I love your dog!!!!!!!