firefighter with pots

[vemee]

This is my first post to the forum. I am a 48 year old firefighter who has recently been diagnosed with pots. I have been having the symptoms for at least 11 years and have always felt it was an autonomic problem but was always told it was anxiety. The worst symptoms occur when I am under heavy physical stress such as in a fire, my blood pressure drops and I almost pass out.. This year the symptoms have gotten worse which has been good since I was able to have these symptoms doing normal work and could check my pulse and blood pressure. Just doing normal yardwork my pulse runs around 150, after awhile I get the nausea and near syncope which I found was during blood pressure drops. I then went to an assortment of doctors who had no idea what pots was and probably did not believe me capable of taking my own pulse. I went t o one university to be tested for pots and expected the full 45 minute test but instead got a 10 minute test with a panic attack diagnosis. Usually I can become symptomatic within 10 minutes but not that day. I went to another university and was able to produce the standing- supine heart rate difference in the doctor's office. A tilt test done by the associate found pots. Florinef was prescribed but did not work. Midodrine at 5mq /8 hours was next but did not work. Orginal doctor gave me another tilt test, pulse went from 72 supine to 128 tilted within 30 minutes. Nitro was given and I passed out and had mini convulsions after a few minutes of the second tilt . Dr. who was barely present during the test said they look at the first part of the test more than the 2nd part and I might have mild pots. He said I did not need medication and could return to full firefighting duties. So I guess when I pass out in a fire I am really not unconscious.

[MomtoGiuliana]

Welcome to the forum, although sorry you are having these problems. How unbelievably frustrating. Sadly too many of us have the same story of a long hard road to diagnoses and proper treatment. In your case in particular, fainting on the job could be very dangerous! Have you been evaluated by a POTS specialist recently (since your university test)? It sounds like that is in order. There is a list of physicians on this webpage. If none of them are nearby, I would recommend trying to see a local electrophysiologist, if you haven't already.

Keep track of your bp and pulse standing and sitting at home and take those records to the specialist, along with the other findings, as well as your history of medicines. My electrophysiologist found my home readings of bp and hr helpful in evaluating my case and my medications when I was very sick with POTS. There are many different treatments available--hopefully something will help you.

You can also try to increase your salt and fluid levels, in the meantime.

Take care,

Katherine

[Guest tearose]

Hi vemee, welcome! I am sorry you have not found a doctor to help you yet.

I too think you need to find someone who specializes in diagnosing and treating POTS. You owe it to yourself to keep on looking until you find one! Trust me, your quality of life will improve when you finally build a medical team that works with you!!!

Thank you for your dedication to your firefighter work! It is a very rough and selfless job.

I can only imagine the extra chemicals that must surge through your body when you are fighting a fire!!! Regular people react to stress in extreme ways, so it is probably accelerating in you!

While you continue to look for answers, I would recommend you try to find some compression garments for your legs to help you maintain your blood pressure. Naturally, this will be more of a challenge for you because of your exposure to extreme heat. As you probably already know, staying hydrated is essential. I hope you can discuss all your issues with a competent doctor soon.

best regards, tearose

[Ernie]

Hi,

Welcome to this forum.

When you are fighting a fire do you have other guys covering for you in case you pass out, ie microphone to call, checking on each other. Maybe it would be a good idea to let the guys know about your problem and plan something in case you do pass out during a fire.

On a different subject our story is an example that we don't get POTS because we are deconditioned.

Have you tried increasing your salt intake? or support socks?

Ernie

[Gena]

I'm sorry you've had such a rough go of it. Have you documented how low your BP gets? And have you told your doctor that you experience symtpoms during yardwork (in other words, situations besides those that would cause "panic")I agree with Katherine in trying to increase your water and salt intake, driniking electrolytes, etc.. Hopefully that will improve your symptoms until you can find a specialist in POTS or an electrophysiologist.

Anxiety and panic attacks are experienced more frequently by those with MVP and any type of dysatuonomia, but what most doctors don't understand, is that they aren't the cause of what's happening in our bodies. It's the malfunction of the autonomic nervous system that sets up the cascade of symptoms.

I can get symptomatic because my BP has gotten too low due to low blood volume, heat, standing to long, etc. , but I can also experience symptoms because my body is producing too much adrenaline or just overreacting to a normal amount of adrenaline, which can lead to anxiety/panic.

It can be very confusing to a doctor who doesn't really understand this syndrome. Doctors can be so quick to just label it as panic attacks. I hope you find someone who can provide you with the proper treatment and understanding very soon.

[Merrill]

Welcome here ... The only other advice I'd add (to the great suggestions already offered that you can do immediately--upping your salt [i sometimes take the tablets you can order through a pharmacy--athletes take 'em, but they're not on the shelf] and electrolytes and fluids to more than 2 or 2.5 liters a day and wearing compression socks/stockings] is to talk to your doctor about beta blockers. My symptoms are similar to yours tho my HR often goes much higher, and sometimes without any exertion, and I just got put on Toprol XL. Many people take midodrine or florinef in combination with beta blockers--and if you were tried on those meds without the bb, it's possible that this may explain why you did not get any relief from your symptoms on those commonly used medications. Beta blockers are extremely safe--I'm told they're the most commonly prescribed med in the world--and the list of things they're not prescribed for is much shorter than the list of things they are prescribed for. Tachycardia is certainly cause enough to try them--even a low dose, like 25 mg a day, can make a difference.

One other note--different medical centers do the tilt differently ... some do not administer nitro or other drugs during the test, and they tilt you for different lengths of time. 25% of Normal people pass out on a tilt test ... but your results--with that increase of hr over 30 bpm--certainly sound positive for POTS.

Be careful out there--you perform an amazing service to others each day as you put your life on the line. I agree it's important you tell others in your company that you may pass out while answering a call. Please take care,

Merrill

[vemee]

Thanks for all of the replies. I have been to one of the pots specialists listed on the site, they were the ones that did the 10 minute tilt test. This took place at the University of Virginia ; the staff was polite and listened to me, they also took a lot of time discussing my case. The hangup was that nothing showed up on the tilt test. The day of that tilt test I was very light headed almost drunk like. The light headedness had been going on for 2 weeks. I have a feeling that somehow affected my test . My own amateur theory is that my body's shunting system is fouled up and sometimes when my body tries to maintain blood pressure it constricts vessels in the brain instead of the areas it should be shunting from but that has no medical backup. My last tilt test was done in Central Virginia by an electro. I think he thought I was doctor shopping for disability retirement . I can not imagine why there is an opinion growing that the part of the tilt table test which causes the release of adrenalin is not that important. We all release adrenalin and if we react negatively to it then we have a problem. The good news is that soon after my post another doctor in the group said I could increase my midodrine to 10 mg. so I do not feel so abandoned by MCV. I will have to start doing poor man tilt tests again and keep a log. I was doing them this fall but never kept the documentation.

[Laura]

Hi, I see from your post that you were trying Midodrine 5mg every eight hours? Is that correct? I am curious about the timing of your doses. Midodrine is short acting (usually finished working after 4 hours) and is usually prescribed to be taken in three or four hour intervals during the daytime hours: shortly before or upon getting up in the morning, at midday, and in the late afternoon. Also, you aren't supposed to take any after 6pm or 4 hours before you go to sleep as it can raise your BP too high when you are laying down. Of course I don't know the reasons why your prescription was made out this way, there were likely other things the doctor put into consideration when making the prescription, but I thought perhaps that might be a reason why it wouldn't be effective for you. With the increased dose of 10mg, have they also changed the dosing schedual?

Laura!

[Miriam Poorman-Knox]

The goblind ate my very insightful thoughts, so I shall try again. Make sure that the drinks you have contain no sugar-even gatorade. Keep your cooling vest etc on shen you can. Get many bottles of salt tabs, and always keep one with you in your pocket, car, at the houe,home etc. Always stay hydrated. As for telling the squad, they might feel that you can't back them up- and you might not. There are studies at the NIH check their website, there are some in april for a week. Its free.

I agree with ?Merril the medicine you take is usually taken with the sodium and not taken at night, unless that is your shift. You have it on alot of us, as you must be in shape and that helps. Get a medic alert bracelet, that says to give Iv fluids. I have one. Peace and wellness Thanks for doing what you do Miriam

[Merrill]

Miriam, Gatorade helps a LOT of us make it through the day.

[vemee]

Laura , the new midodrine prescription is for 3 times a day morning, noon and before 6. I think that is what he meant last time but made a mistake by doing the interval by hours. Anyway my pharmacist told me the correct schedule.

[Laura]

Oh, good! I hope you have more success with it this time round! Hope you didn't mind me asking, I was just a little concerned for you. Laura!

[blackwolf]

welcome to the site vemee

while working as a cna(night shift in a nursing home) and during the busy days i took 5 mgs of midodrine(proamatine) every 2 hours as long as i didn't take more than 45mgs in a 24 hours period i was fine. i no longer tolerate proamatine as i get chest pain after every dose. there is a 10 mg dose for proamatine also. i am currently working with my doc to get on mestinon (a new option being studied at mayo) and see if it makes any difference.

Do you compression hose? i don't know if anyone else asked this, they are very helpful for most people. i also agree with the others, drink water and add a drink like gatorade, preferably without sugar. extra salt will help you too, i can't handle salt tablets, so i salt most foods and often drink broths that are very salty.

good luck and i hope you get the help you need. never be afraid to go to several docs to get the help you need. we often heve to go thru a few "fired docs" before finding the right ones.

blackwolf

[steph37822]

oops

[MightyMouse]

Vemee, that's not the correct dosing for Midodrine--it's every four hours upon waking, until 4 hours before bedtime (so as not to provoke supine hypertension). So, if you wake at 6am, that's your first dose, then next at 10am, then 2pm, then 6pm (assuming a bed time somewhere between 10 and 12pm). That's 4 times a day, not three, unless you're sleeping 10 to 12 hours a night.

Midodrine only lasts 4 hours in the blood stream. Also, 5mg is a moderate dose, but there are people who are on more or less. My dose ranged from 2.5 mg to 12.5 mg depending on my cycle, the temperature outside, and the activities I was involved in. My most consistent dose was 7.5 (one 5 and one 2.5)

Florinef can take weeks to work, although it's only useful for a portion of those with autonomic problems.

Last, and probably most important: get yourself to a doctor who knows about this stuff. There are physician referrals in several locations.

Here on DINET:

http://www.dinet.org/physicians.htm

on NDRF:

http://www.ndrf.org/

see the section marked "medical network" (their forum site is working, but the main site is still offline--give them a few days)

on the Chronic Fatigue folks site (since there's overlap in symptoms, some of these docs may also know of autonomic problems)

http://www.co-cure.org/Good-Doc.htm

and, there is the american autonomic society

http://www.mc.vanderbilt.edu/gcrc/aas/indx.htm

Nina

[MightyMouse]

Oh, and what folks are telling out about different ways of doing and interpretting the tilt table tests are correct. You should also be aware that preparation for the test matters... you should be off all meds, and off florinef for at least 2 weeks prior. Within 24 hours, no caffiene or cardioactive medications. 12 hours prior, no food.

[Eillyre]

Welcome Vemee!

[DawnA]

Welcome to the forum! Everyone has said everything! All I can say I am sorry you are having such a hard time with Drs. I have been there. I hope you can get this all sorted out soon.

Dawn A

[briarrose]

Vemee

You've been given some excellent advice and there have been some great replies. I concur with most of what was said. I had a reaction to using Midodrine and I've had my prescription filled for Mestinon for sometime but haven't had the guts to try a new medication. I do take a beta blocker that helps with the tachycardia, Florinef and high doses of salt through food, Epogen injections to increase my body volume, IV Iron and Neurontin for the chronic pains that we tend to get.

I would definitely suggest that you do your own research for information already done in the medical field as there have been several good works done on everything from symptoms to medications and they have been listed out on pages here.

I would also suggest doing searches here for what ever that your inquistive about.

Take care

Steph

[vemee]

Thanks everyone for the great advice. I do have a question concerning midodrine. I have read that it does not need to build up in your system as florinef; does that mean you should see a change when you first take the pills or does it take a week or so before it is noticiable?

[MightyMouse]

It should be noticable within 20 minutes of taking it. One sign is working is that you might get goosebumps or a hair-standing-on-end sensation. It's possible that if you did not get that, the dose was too low.

An FYI, I was on florinef AND midodrine at the same time. Florinef takes weeks to build up, and is a drug that should be weaned slowly and takes weeks to leave your system. Midodrine is short acting and has a short life in your system--like I said earlier--4 hours.

Nina

[Miriam Poorman-Knox]

for what its worth, it wasn't until I was on florinef that and midrodine that I really could see a positive difference. And it took them a couple of months to add florinef. So keep them informed, Miriam

[SarahB2003]

Wow! I am only 16 and I joined my local fire department as a junior firefighter in January 2019 and in May 2019 I was diagnosed with POTS after passing out up to 60 times in 3 weeks I had seen 6 doctors at my local hospital and 2 major hospitals here in North Carolina. Extremely frustrating and I was finally placed in an observation unit and about every 2-3 months I end up in the hospital with fluids being pumped in me. I go to achool full time and work 2 part time jobs and I am still volunteering at the fire station. I refuse to let my diagnosis change anything about I want to do... even if that means I have to drink and excess of water and take atenolol twice a day and not stand long or stand up too fast!