Need a Good Vent (or cry)

[MeganMN]

I feel like I have sort of come to rely on all of you in some way, for understanding, and information, and support, and just to know I am not alone in all of this. I just got done with one of the worst days that I have ever had since all of this started three months ago. I feel so discouraged.  I have had a rough week anyway with backing off a little bit on the Propranolol and having a high heart rate. Thankfully the severe dizziness was almost gone on the lower dose, but my heart rate in the 130's was not great. Then last weekend I began having Bigeminal Premature beats with a rate about 30-38 with symptoms.  I got the 48 hour Holter 2 days ago so that is good at least. Today I woke at 4am with palpitations and a heart rate in the 40's.  I went to work anyway and felt like poo.  By 10:30am I was in the 130's so I took my Propranolol.  It tapered off into the normal range and was up again by 5:30pm.  I asked one of the ER docs what he thought, and he said to take the Propranolol because high was better than low, and now I am sitting here at 35.  I just feel so frustrated.  My EP made an appointment to see him again in TwO MONTHS! I cannot live like this for two months!!!! Feeling thankful that I work in a place where I can get advice, but this is crazy. How can a person survive like this and have any kind of normalish life....    Rant over.

[jklass44]

I’m sorry you’re having such a rough time - I can totally relate! How long have you been on the propranolol? Personally, I had to try about 8 different medications in order to find one (actually two) that worked well in combination for me. I’m not symptom free by any means, but my days are a lot more manageable. 

How many hours do you work per week? I too work in the medical field and have had such a decline in how many hours my body can handle. It definitely wasn’t an easy thing to accept - I love my job - but there comes a point where you can’t continue to push yourself through symptoms. 

Can your GP help you out until you see your EP again in two months?

[Pistol]

Dear @MeganMN - I also can relate and have been in your shoes. I would definitely call the EP and tell him about your symptoms, he may want to see you earlier or advise you as to what to do. When I was in your exact situation ( better on BB but bradycardia when on it, bigeminy as well ) my cardiologist switched my BB ( I was on several ) and took me off Norvasc. I have hyper-POTS, so calcium channel blocker is needed for vasoconstriction and hypertension in my case. Once I started Coreg the tachycardia and bradycardia went away but I had to slowly increase from 3.125 mg to 25 mg. But even with the lower dose I found improvement and never was bradycardic again. --- I was a nurse as well and know what it is like to push through bad symptoms just to finish your shift. As @jklass44 mentioned - there comes a point when work ( especially 12 hour shifts ) are no longer doable, at least until you are stable on meds. In my case I worked for years with unstable POTS and made things much worse. Can you cut down hours or days until you feel better? When I was too sick to work my PCP gave me restrictions and my employer switched me to a desk job ( which I hated but could tolerate better ). Would that be something that might be possible for you until the monitor results are back and you have some answers and hopefully better treatment options? --- I wish you well and please call your EP or tell your PCP what is going on. 

[RecipeForDisaster]

For me, I have had good results with long acting metoprolol in low doses , and I'm allowed to take twice as much if I need it. I find that if I take double, I end up with bradycardia with bigeminy too. I have to keep my rate above 50 to avoid bigeminy. I think it's the heart really trying to get that rate higher!

 

I hope that you can find comfort soon. I think normal people have no idea how uncomfortable it is when your rate is, say, higher than 90 when doing nothing, or under 50. Laying in bed, I am bothered by a rate above 80 or so. It used to be in the 60s... and now it is if I am taking metoprolol.

[MeganMN]

thanks everyone! The weird thing is that the bradycardia and bigeminy occurred on the lower dose of Propranolol. I asked the ER doc for advice while at work and he said I should go back to the higher dose of Propranolol and call the EP.  So yesterday and today I took the higher dose and my heart rate is normal and I just have the constant dizziness and vertigo back again. YAy, trade one thing for another.  Anyway, he was waiting for the results of the Holter but in the meantime, he wanted me to start 0.4mg of Florinef. This seems like a really high starting dose for someone already super sensitive to meds. I may start lower and see how I feel. I react to medications so much and am so dang sensitive to stuff. Does 0.4 seem high for a starting dose? Will hopefully hear from his office in a day or two about the Holter results.....

As far as the work stuff, right now I cannot do anything but muddle through. I only work 10 shifts in a four week period, and they are all 12 hour shifts. We have three kids and my husband is in school though, so my income is it.  No options there, so I am going to have to just plod ahead (or wobble and weave anyway).  thanks so much for listening and understanding! Will let you know after I hear about the Holter.

[MeganMN]

If anyone would be willing to send me a PM, I would love it!  I am totally freaking out right now. Yesterday at work I had some weird allergic reaction a nd got super flushed and scratchy throat and dizzy, red and splotchy all over.  Now it is happening again. I am splotchy and red and sweaty and chest tight and scratchy throat.  I feel like my body is just flipping out.  Anxiety I never had before and now feel like a basket case. I Do not even want to go back to the doctor because I feel like they are just going to label me mentally ill.....  Eek. 

[StayAtHomeMom]

I can relate as well. When I was first diagnosed and trying meds, if I feel it didn't work I would just suffer through til it was time for the next appt. But when my cardiologist found out I was doing this he frowned at me and said if the medicine is not working you can call and either I can call in a different prescription or have you come in sooner to be seen again. 

Since then I have learned to keep in contact with my doctors. Most of my doctors have a portal that I can shoot a quick message. And they can answer it in their own time. Sometimes they call back but mostly it is just an answer to my question. 

If you feel things are not working, talk to the doctor or even nurse and try to see if he wants to try a new med, or have you come in, or wait it out 2 weeks. (These are the usual options). 

[Pistol]

Regarding what @StayAtHomeMom said: if I need my doctor's attention I get it - preferably by him answering my calls ASAP before I get too ill. I am blessed with doctors that are - during normal business hours - available and if I need help quick and get one then I can get another. Yes - online portals are great and I do use them but for questions that need to be answered THAT DAY I call and ask to talk to the nurse, they usually get back by the end of the day for important things. 

[MeganMN]

I think I need to still find a doctor that I like. The EP only comes up here once a month. I am planning to maybe switch back to the regular Cardiologist because they have office hours every day as opposed to once a month! I do not even have a way to see the EP again until March. Good advice from all though!  I think the tough part is that one day with bad symptoms can seem like an eternity, and I have to know when to call for help or get a sooner appointment, and when/how long to wait and be patient. 

[Pistol]

Dear @MeganMN - I am familiar with that dilemma! In the beginning of my illness I called my - saintly!!!! - PCP several times a week and had an appointment several times a month because I was so scared by my many symptoms. He patiently listened, never complained and tried to help with every symptom. POTS is a demanding illness for both us as well ax our docs . Over the years I have learned that certain symptoms are just a part of Pots and that I have to live with them - but it takes time to discover that. If it is something  that worries you I would always call the physician - that is part of their job!!!! 

[jklass44]

I agree with @Pistol - finding a kind and attentive PCP can make all the difference! I went through a few until I found the one that I knew had my back. He’s been amazing at helping advocate for me and he never complained when I found myself in his office multiple times per week. This illness sucks, and unfortunately there are some things we just haven’t to learn to live with... But it helps having a great PCP to work through that list with you!

Keep looking and best wishes

[MeganMN]

On this topic, @Pistol and @jklass44 and other, how do you deal with doctors not listening to your wishes and wants?  The EP keeps wanting to throw more meds at me and I REALLY STRONGLY feel that my symptoms snowballed and worsened intensely when I started the medication.  I do not want to be on the Beta Blocker and have now resorted to self-tapering because it is making me so sick.  I know my body and know how I respond to things and I am so much worse on it than I was before.  I do not want to be dubbed non-compliant, but I need to get off of it- it is seriously making me very ill.  I would much rather taper with a doctor's blessing than without, but.......he will not listen.  So now I am uncertain of going to see any doctor, because I want to be truthful with them, but I am not taking the meds as he prescribed.  I just know that I went from being occasionally dizzy and tachycardic, to being dizzy all the time with a multitude of other symptoms.  I feel like poo, and before I was managing!  I just know my body and how I respond to things!

 

[jklass44]

@MeganMN From my own experience, I had to self advocate a LOT. You have to willing to be open and honest with your doctors - if something isn’t working (or if something is working!) they need to know about. A symptom of taking beta blockers unfortunately is lightheadedness and dizziness which can sometimes take some getting used to until your body is accustomed to it. However, if it’s impairing your daily function this much I would again say to contact the doc that prescribed it. If he/she is not taking your concerns seriously... BYE! On to the next! Not every doctor will fit the needs of every single person, so it’s important that you find one that will work with you and LISTEN to you!! Like you said, you know your body best - I said that exact thing to many doctors throughout the years so you’re not alone!!

[Pistol]

@MeganMN - my mother is 87 years old. When she was in her late fourties she began passing out and having fluctuating blood pressures. Back then no one knew about POTS. She was told she had psychological problems etc. The cardiologist put her on a BB and she did not at all respond to it, as well as develop crushing fatigue. She asked to cut the pill in quarters in the morning and half in the pm - the cardiologist told her that is not the way BB's work and that she was noncompliant if she attempted this. She fired him, had her family doctor prescribe her meds and she cut them into whatever pieces she darn well pleased - and lived happily ever after. Today she is - of course - diagnosed with POTS and is well maintained on her meds. So - do what YOU know is right but within reason. It is right what @jklass44 said - BB's can cause problems in the first weeks to months until your body adjusts - but some people also get very ill on them. They are very strong meds and are not for everyone. Listen to your body and take care of it!!!!!

[MeganMN]

Well, I reached out to my GP and she recommended that I call the Cardiology office here at the hospital where I work.  I called them and they do not want to see me because they do not want to step on the Electrophysiologists toes.  Nice.  So I got nothin'....  The EP said he is not concerned about the dizziness and take some Florinef and see him in March.  Seriously.......sigh.  and this is why I do not even want to bother.

[Pistol]

Sorry @MeganMN - whenever this same scenario happened to me I went back to my PCP and had him take care of it. In the end the PCP is the one who cannot turn you away - hope you have a good one? 

[WinterSown]

25 minutes ago, MeganMN said:

Well, I reached out to my GP and she recommended that I call the Cardiology office here at the hospital where I work.  I called them and they do not want to see me because they do not want to step on the Electrophysiologists toes.  Nice.  So I got nothin'....  The EP said he is not concerned about the dizziness and take some Florinef and see him in March.  Seriously.......sigh.  and this is why I do not even want to bother.

That's bizarre, they should be coordinating with your EP instead of telling you they don't want to interfere in his fiefdom! If you can, should you go looking for new doctors, try to find a set that all work for the same group. My Cardiologist, EP and Neuro all work together for the same hospital group and they all can access or amend my records. They function as a team for me--this is what you need. You need doctors that will work with each other to get you better. I would drop into the cardiology  office at the hospital and schedule an appointment in person. Don't let strangers make decisions for you. You want an appointment there so get one. Ask in person because it will add to your seriousness.

 

[StayAtHomeMom]

11 hours ago, MeganMN said:

On this topic, @Pistol and @jklass44 and other, how do you deal with doctors not listening to your wishes and wants?  The EP keeps wanting to throw more meds at me and I REALLY STRONGLY feel that my symptoms snowballed and worsened intensely when I started the medication.  I do not want to be on the Beta Blocker and have now resorted to self-tapering because it is making me so sick.  I know my body and know how I respond to things and I am so much worse on it than I was before.  I do not want to be dubbed non-compliant, but I need to get off of it- it is seriously making me very ill.  I would much rather taper with a doctor's blessing than without, but.......he will not listen.  So now I am uncertain of going to see any doctor, because I want to be truthful with them, but I am not taking the meds as he prescribed.  I just know that I went from being occasionally dizzy and tachycardic, to being dizzy all the time with a multitude of other symptoms.  I feel like poo, and before I was managing!  I just know my body and how I respond to things!

 

Sometimes it is coincidence. Other times you just need a different med combo. There are dozens of beta blockers and I am sure you wouldn't react the same to all of them. If you don't trust your doctor get a new one. They work for you. But they are also working with limited knowledge and are only human. Sorry I am kind of contradicting. 

[bunny]

Don't be afraid to fire your doctors.  As unpleasant and scary POTS / dysautonomia can be, it's not fatal.   There *ARE* good doctors out there.  

If I did everything the doctors wanted me to do over the years, I would have:

1) An implanted defib. The Dr tried to pressure me into this, saying I'd "DIE without doing this immediately!"   That was 20+ years ago.  I'm not dead yet.

2) An implanted pacemaker.   

3) At least 3 surgeries to replace the dead batteries in the pacemaker

4) Had my small intestine removed

5) Had my  large intestine removed

6) Have a colostomy bag

7) Be unable to work due to how the meds made me feel

8 ) Be in a wheelchair

9) Be dead.   I've had doctors' treatment plans cause me to code while I was in the hospital.  I told the Dr in advance I thought this was a bad idea, he insisted it was the standard protocol.... I coded about 18 hours later.  I have a copy of the 2-lead ECG where I flat-lined framed. 

I've done none of these things and my current quality of life is infinitely better than it would have been with any of aforementioned things.  Sure, I'm symptomatic at times, but it's still a heck of a lot more enjoyable. 

Doctors, like politicians, don't have to live with and often don't think of the unintended consequences of their actions.  Kind, well-meaning doctors aren't always right.  Even esteemed experts in the field can be wrong (My #9 above was supposed to be one of the top 5 Drs in his field in the USA...)  Some of the best Drs I've had over the years weren't experts, but they could think logically and cared enough to read through the literature to come up with solutions.  I had a GP who was superior in knowledge to specialists.   

YOU are the only one who knows how you feel and you're the one who has to live with these medical decisions.  If need be, take a friend with you for support and to help you speak up and advocate for you.  It's YOUR body, YOUR decision.  

[Pistol]

@MeganMNI fired 5 cardiologists and stuck with my PCP who always has my best interest in mind. So much so that I begged him for years to have a port for home infusions and he did not want me to because he was afraid I would suffer from blood clots or sepsis from the port. Only when my - also very good - local cardiologist agreed to the port AND there were several times when ER docs and hospitalists refused to give me the IV fluids he recommended did he finally agree to it. He went out on a limb for me and that was the best thing he could have done for me since today I am stabilized due to the weekly infusions. So - yes, doctors follow guidelines but the good ones will listen to YOU and not the guidelines. --- I have also noticed that some docs do more talking then listening - watch out for those. When I see my docs I do the talking first and then they get their turn. How else will they know what is going on? So - pay attention to their ability to listen to your story and do not just respond to a list of symptoms they address stating current rules  --- I have noted that some doctors will concentrate on ONE symptom that they know how to treat just to get you out of the office but disregard the many other, more vague symptoms we mention that they do not know what to do with. 

[MeganMN]

Wow, thanks to everyone who reponded!  I am on Day Two now of incessant dizziness, extreme sleepiness/fatigue, headache, ringing in my eaR, and low BP.  The EP's office called this morning and I guess he fired himself.  He recommended I coordinate with my GP to go on down the line to a Neurologist and/or ENT.  Still somewhat frustrating as it may be weeks to get that sorted out, but in the meantime, I trudge onward! At least there is a plan of sorts.

[StayAtHomeMom]

1 hour ago, MeganMN said:

Wow, thanks to everyone who reponded!  I am on Day Two now of incessant dizziness, extreme sleepiness/fatigue, headache, ringing in my eaR, and low BP.  The EP's office called this morning and I guess he fired himself.  He recommended I coordinate with my GP to go on down the line to a Neurologist and/or ENT.  Still somewhat frustrating as it may be weeks to get that sorted out, but in the meantime, I trudge onward! At least there is a plan of sorts.

My specialist is a neurologist. When my cardiologist (second one BTW) try to refer me to my local EP, the EP said I don't want her she needs to see a specific specialist that is 3 hours away. It is rough seeing him. But he was the first doctor to truly listen to my symptoms and believe me. I now have a good team of doctors and that makes it big difference. It took me about a year and a half to find them. I am actually working on my specialist seeing my oldest son who I suspect has it as well. There has been some scheduling issues but fingers crossed he can see him on Monday

[Delmar]

It is so incredibly difficult to deal with this condition. I have dealt with it for many years, and I went to many doctors who simply said that I was experiencing stress/anxiety. (One had the nerve to tell me that I was pretty and that I should just get myself a boyfriend). I had 5 spine surgeries, because I was always in pain. Now I’m 47, unable to work( I’m an RN) I suffer from dizziness, internal vibrations, feelings of being strangled, difficulty breathing, vertigo, migraines, palpitations... and the list goes on. Mestinon helps but not enough. If only I had found good, caring doctors early on, who had taken the time to listen. Please don’t give up and look for a good specialist who can help stabilize your symptoms.

[Pistol]

Dear @Delmar I am so very sorry to hear about your struggles. I too have been exposed to ignorant and incapable MD's and have been damaged by them. Have you been diagnosed with dysautonomia? And what meds/ treatments do you take/follow? Is Mestinon your only med prescribed? 

[Delmar]

I was diagnosed with dysautonomia 6 months ago. I have a history of congenital scoliosis, tethered cord syndrome, dyastematomyelia, and dystonia. I currently take mestinon 60 mg 4 times a day which has significantly relieved my tachycardia.( my heart rate used to go up to 140 ). I couldn’t walk 2 blocks without feeling like I was getting a heart attack. And all my symptoms would go away the moment I laid down in bed. But at night my heart rate could easily drop to 48-50 with really bad palpitations. Mestinon is the only medicine I’ve been given so far. But I’m also taking meds for spasms for my neck, baclofen, Valium. Botox.  And tramadol for pain. Topamax for migraines .