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[Jessica_]

Hi my name is Jessica and for the past 10 months I have been a observer of this website desperately looking for answers. Googling all my symptoms before I knew what in the world was going on with my body and usually something on this site would pop up. 

I suppose I will start with my lil story; in January of this year I had a SVT attack. I have had SVT attacks since my early 20’s but never one like this one. This one lasted longer and almost made me pass out. I was also very sweaty. Once it was over my heart wouldn’t go below 170 so I ended up calling 911. The docs didn’t know what was happening and they kept me in ICU over night. The next day the cardiologist decided to blame my high heart rate on my thyroid and placed me on Atenolol and sent me on my way. Long story short this WASNT my Thyroid. After dozens of different doctors visits, ER visits, even a heart ablation to fix the SVT to see if that helped anything my symptoms remained. Constant heart rate 120-130. Attacks of sinus rythym of 170-180 with impending doom and feeling horrible. The constant sweating of my palms and my feet. I finally was convinced I had dysautonomia and POTS and I think the SVT induced this. I did the at home version of HR check going from sitting to standing and I would go from 70 to 140. I begged my EP to refer me to a neurologist and he did, I waited 4 months for my appt with Dr. Cortez and I was oh so excited to pick her brain about this condition since she was the POTS specialist in Utah and the only doctor that would know anything about what I am going thru. Little did I know I would never get the chance to meet this doctor. Anyhoo, she did a chatocolomine blood test and my norepinephrine levels are slightly elevated at 729. She also did a tilt table test and my HR and BP went thru the roof! But since on minute 7 my body started going down and my heart went from 150 to 99 she said I didn’t fully meet the criteria for POTS and she refused to see me. 

I guess I am here because I am still so lost. I am still struggling everyday and I cannot seem to find a doctor to help me. How can I not fit criteria for POTS when my HR goes 30-40 beats faster everytime I get up? My Diastolic BP is also high 85-100. 

My biggest symptom right now however that is plaguing me is the attacks. Most nights after 2-3 hours of sleep I wake up in a sweat and tingling and my HR goes thru the roof. Doesn’t matter if I do deep breathing or anything, it goes off until it’s done. These attacks are starting to happen during the day and it’s causing me the worst anxiety which in turn only makes the attacks worse. Has anybody had any relief with these and if so, HOW? 

Is there a medication that specifically calms the SNS? My honest opinion is that I am having adrenaline rushes and since my norepinephrine is already high it’s like a volcano. Someone help!!

ps I am currently taking 10-20mg of Propanolol 2x a day and midodrine 5mg 2-3 x a day per my cardiologist. 

 

Thank you for reading my novel. I look forward to being apart of this lil community and actually communicating with people who can relate!

[RecipeForDisaster]

I do have the awful nighttime tachycardia and rotten sleep.

 

The part about not actually seeing the neurologist resonates the most with me. I was excited to see a dysautonomia expert neurologist in Boston and waited almost a year... he required testing before I saw him and I didn't meet the criteria he wanted, so I never saw him and was ditched. What a feeling!! I thought he was going to help me. I have seen about 6 more doctors since then, and 3 have each put me on a different helpful medication. It's crazy but it's starting to finally work, I think! Hang in there, keep fighting. I don't feel good but it's a fair amount better than a few months ago. I'm on a similar regimen (midodrine and metoprolol plus lots of unrelated meds) with the addition of pyridostigmine just this week-it's helping.

[MomtoGiuliana]

This may be helpful in terms of "what works" to address symptoms:

https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/

Here is the clinical definition of POTS:

https://www.dinet.org/content/information-resources/pots/pots-an-overview-r95/

 

 

[Jessica_]

On 11/22/2017 at 4:25 AM, RecipeForDisaster said:

I do have the awful nighttime tachycardia and rotten sleep.

 

The part about not actually seeing the neurologist resonates the most with me. I was excited to see a dysautonomia expert neurologist in Boston and waited almost a year... he required testing before I saw him and I didn't meet the criteria he wanted, so I never saw him and was ditched. What a feeling!! I thought he was going to help me. I have seen about 6 more doctors since then, and 3 have each put me on a different helpful medication. It's crazy but it's starting to finally work, I think! Hang in there, keep fighting. I don't feel good but it's a fair amount better than a few months ago. I'm on a similar regimen (midodrine and metoprolol plus lots of unrelated meds) with the addition of pyridostigmine just this week-it's helping.

Thank you for your response! It’s pretty crazy to me that a doctor can get to decide who’s “bad enough” to get the privilege of being treated by them. It’s beyond frustrating. I thought I was doing okay on my current regime until these last 2 weeks, I have completely crashed and burned. Trying to hang in there but it’s getting hard!

[Jessica_]

On 11/22/2017 at 6:35 AM, MomtoGiuliana said:

This may be helpful in terms of "what works" to address symptoms:

https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/

Here is the clinical definition of POTS:

https://www.dinet.org/content/information-resources/pots/pots-an-overview-r95/

 

 

Thank you!! 

[Nathalie]

I personally think you can do better. You deserve better. Find a new neurologist. Or try the Mayo Clinic.

The best thing anyone can do for themselves is to be their own best advocate. Don't take "no" for an answer.

What I don't understand is...is a person's heart rate supposed to stay above 30 BPM above resting or above 120 BPM for over 10 minutes to qualify for a POTS diagnosis?? I've never interpreted any of the diagnostic criteria that way -- any one else??

[Danil2345]

Hang in there and keep an optimistic attitude. I found for myself that once I stopped focusing on the problem (and stopped worrying about my heart, fainting, not being able to work etc.), I started to get better. Get fully checked out and resolve any outstanding medical issues but also know that this is something that can get better. After months in and out of the hospital, seeing multiple specialists and going off work, I got my ferritin up to a level that was decent (70-80) which I believe allowed me to exercise and get back on track. I now exercise 5 times per week, my v02 max has gone up (although still quite low for my age and thin body type)  but I feel a million times better (knock on wood). I started by exercising in a recumbent position for very short amounts of time then slowly built up to 30-40 minutes on an upright bike. I did this as part of a free cardiac rehab program at one of the hospitals in my city. This, for me, was the turning point. As was focusing on the positives and relaxing my nervous system which was on overdrive due to a number of stressful events in my life and my personality type. Doing yoga and meditating were next to impossible when I was really ill but I forced myself and I believe they helped significantly, along with therapy. I did Jon kabatt zinn's 8 week MBSR program and this was amazingly helpful at giving me tools to calm my nervous system (I paid for this program and it was worth it - I found a less expensive program through the community centre and know that if I asked my doctor I could have been referred to a program for free but didn't want to wait). The mind is a critical part of dysautonomia and MBSR has helped a lot of folks.

I also cut out gluten and lowered dairy consumption (just in case) and got rid of allergy triggers to help my sleep (replaced old pillows with hypoallergenic latex and started dusting more). Everybody is different but the nervous system is something that is flexible and can be reprogrammed and you can get better. I strongly recommend regular sleep for healing.

Remember a lot of people in the forums are people who are still looking for answers. Many, if not most, people with POTS lead very normal lives and get better or mostly better but those stories aren't often posted. I still have a high heart rate sometimes (mostly in mornings) but am back at work full time as a lawyer and I measure and notice my heart rate much less even when it's high (which is less and less). In some ways, I consider my encounter with this illness as a blessing (I didn't while I was sick). I have learned so much about how I perceive illness and other life challenges and learned limits and healthier coping strategies. I don't love exercising but if that's what I have to do to stay healthy, that's a pretty good treatment. Anyways, try to stay positive and know that once you find what works for you, things can get a lot better. 

[Jessica_]

On 11/24/2017 at 9:50 PM, Nathalie said:

I personally think you can do better. You deserve better. Find a new neurologist. Or try the Mayo Clinic.

The best thing anyone can do for themselves is to be their own best advocate. Don't take "no" for an answer.

What I don't understand is...is a person's heart rate supposed to stay above 30 BPM above resting or above 120 BPM for over 10 minutes to qualify for a POTS diagnosis?? I've never interpreted any of the diagnostic criteria that way -- any one else??

THANK YOU! 🙌🏻 I was very upset when I learned she would not see me, i was actually crying. I had waited 4 months for my appointment and was so excited to see an actual POTS doctor. Apparently she’s “so busy” that she will only see severe cases. I might look like a mild case on paper but to me my everyday is anything but mild. I am still trying to fight the good fight and try and find a doctor who will take the time to help me. I called and got placed on Dr. Grubbs waiting list but im not sure I would even be able to make it to Ohio! Thank you for your response it is refreshing to hear from people who get it. 

[Jessica_]

On 11/26/2017 at 8:39 AM, Danil2345 said:

Hang in there and keep an optimistic attitude. I found for myself that once I stopped focusing on the problem (and stopped worrying about my heart, fainting, not being able to work etc.), I started to get better. Get fully checked out and resolve any outstanding medical issues but also know that this is something that can get better. After months in and out of the hospital, seeing multiple specialists and going off work, I got my ferritin up to a level that was decent (70-80) which I believe allowed me to exercise and get back on track. I now exercise 5 times per week, my v02 max has gone up (although still quite low for my age and thin body type)  but I feel a million times better (knock on wood). I started by exercising in a recumbent position for very short amounts of time then slowly built up to 30-40 minutes on an upright bike. I did this as part of a free cardiac rehab program at one of the hospitals in my city. This, for me, was the turning point. As was focusing on the positives and relaxing my nervous system which was on overdrive due to a number of stressful events in my life and my personality type. Doing yoga and meditating were next to impossible when I was really ill but I forced myself and I believe they helped significantly, along with therapy. I did Jon kabatt zinn's 8 week MBSR program and this was amazingly helpful at giving me tools to calm my nervous system (I paid for this program and it was worth it - I found a less expensive program through the community centre and know that if I asked my doctor I could have been referred to a program for free but didn't want to wait). The mind is a critical part of dysautonomia and MBSR has helped a lot of folks.

I also cut out gluten and lowered dairy consumption (just in case) and got rid of allergy triggers to help my sleep (replaced old pillows with hypoallergenic latex and started dusting more). Everybody is different but the nervous system is something that is flexible and can be reprogrammed and you can get better. I strongly recommend regular sleep for healing.

Remember a lot of people in the forums are people who are still looking for answers. Many, if not most, people with POTS lead very normal lives and get better or mostly better but those stories aren't often posted. I still have a high heart rate sometimes (mostly in mornings) but am back at work full time as a lawyer and I measure and notice my heart rate much less even when it's high (which is less and less). In some ways, I consider my encounter with this illness as a blessing (I didn't while I was sick). I have learned so much about how I perceive illness and other life challenges and learned limits and healthier coping strategies. I don't love exercising but if that's what I have to do to stay healthy, that's a pretty good treatment. Anyways, try to stay positive and know that once you find what works for you, things can get a lot better. 

Thank you for response! I have actually been wanting to start doing yoga and meditation for quite some time and I can’t seem to find the time with my 2 & 4 year old. I know that sounds like a lame excuse for someone who is so desperately wanting to get better. I suppose i will try and figure a schedule out and start, i am sure it will be the best thing for my body right now since I seem to be stuck in the “fight or fight”. I am happy for you that you were able to get better that is amazing! I often think how ungrateful i was when i was healthy and active and I guess this experience has definitely opened my eyes to how much the little things matter. 

[Ryry1305]

I am currently dealing with a very similar situation. I have lyme, POTs, and another heart arrythmia ( idiopathic VT) that was diagnosed in March. In March, cardiologist put me on a beta blocker.l for the arrythmia. For the next few weeks, it worked well. Then I started having breakthrough Tachycardia, heart rate going up to 150 but in sinus rhythm (Id previously never had rates that high before). Cardio said to increase the beta blocker ( metoprolol). I did and that kept the Tachycardia and arrythmia away for 6-7 months. I thought it was really well managed, although the bb made me feel awful almost all the time). Well, last Friday, my heart rate went up to 160 when I was getting dressed. Had to call 911, paramedics said it was sinus Tachycardia. POTs had been acting crazy all week, where my heart rate would increase 20+ points from a slight movement in bed, 30-40 points when sitting to standing. This is very atypical for me, and a very drastic increase in POTS. Followed up with cardio he said to get back on Florinef, increase salt and fluids. I have been hydrating like craxy, taking salt stick capsules, past 4 -5 days, and still having episodes of Tachycardia. Last night, I was sitting on couch talking on phone, and heart went to 150, and I felt horrible. I was sure I was going into an episode of ventricular tachycardia. Called 911, barely made it downstairs to meet them. HR was 150 with them, but sinus. I insisted onER Bc i wanted to get to the bottom of this. ER was useless, the gave me fluids, but didn't notice any difference. My HR never went down below 100. ( my normal reasting Hr on the bb is 60-75). I am starting to wonder if I now have SVT in addition to POTs and idiopathic VT. I have NO idea how I am going to manage this, and am beyond stressed. I can't have my heart going up to 150-160 every day or other day. I have no idea what's cause this sudden increase in symptoms or why the beta blocker has appparently totally stopped working. I feel your pain so much. The ER was like "you're complicated". really? I also have had high BP and the higher lower number like you. I know cardio will want to increase bb. I don't know how I'll possibly tolerate it! I think it seems we both have hyper POTS. It seems like we are having way too much adrenaline. I have no idea waht we can do!!! If you want my contact info to stay in touch lmk! I'd really like a buddy with this! It's horrendous!!!!!!!! I have NO CLUE how to handle/ manage multiple heart conditions. This is very disabling for me. One other question - at what point or HR do you call ER? I'm starting to think I'm just gonna have to live with this... I can't be going to ER every day. 

[dizzyape]

Add in Gastroparesis and a lot of dizziness and fatigue and you just told my story. SVT started when I was 11, 3 ablations later I thought I was done with that. Irregular heartbeats, dizziness around my period etc ensued for the next 15 years and then 2 years ago gastroparesis symptoms started and crazy heavy periods. I had a hysterectomy and while in recovery I went into tachycardia. Now ever since (7 months) I am having chronic fatigue, dizziness, vertigo and tachycardia. I'm taking 10mg of propranolol 3 x a day.  I get the adrenaline rushes too. I had a tilt table test as well as the norepinephrine test. I was diagnosed with inappropriate sinus tach, "some" orthostatic intolerance and Ehlers-Danlos 3. I got on here tonight because I was trying to lay down and sleep and the surges of adrenaline are horrible. It then causes my heart to race and the anxiety kicks in. My husband says just lay down and sleep. He doesn't understand I try and these surges wake me up every couple of minutes.....so I feel your pain. I hope you get more answers soon and feel better.  

[Jessica_]

On 12/12/2017 at 9:16 PM, dizzyape said:

Add in Gastroparesis and a lot of dizziness and fatigue and you just told my story. SVT started when I was 11, 3 ablations later I thought I was done with that. Irregular heartbeats, dizziness around my period etc ensued for the next 15 years and then 2 years ago gastroparesis symptoms started and crazy heavy periods. I had a hysterectomy and while in recovery I went into tachycardia. Now ever since (7 months) I am having chronic fatigue, dizziness, vertigo and tachycardia. I'm taking 10mg of propranolol 3 x a day.  I get the adrenaline rushes too. I had a tilt table test as well as the norepinephrine test. I was diagnosed with inappropriate sinus tach, "some" orthostatic intolerance and Ehlers-Danlos 3. I got on here tonight because I was trying to lay down and sleep and the surges of adrenaline are horrible. It then causes my heart to race and the anxiety kicks in. My husband says just lay down and sleep. He doesn't understand I try and these surges wake me up every couple of minutes.....so I feel your pain. I hope you get more answers soon and feel better.  

I’m sorry you suffer with them too! I just woke up and had one and it’s awul. its Like my body just freaks out and I’m just there for the ride with no control. Deep breathing doesn’t help, trying to “relax” doesn’t help. I hate it! Each time this happens I feel like I’m going to die.  Hoping we both start feeling better soon 🤞🏻

[p8d]

Have you had your catecholamines (? Spelling) checked?  Alpha blockers, clonidine or methyldopa have helped me and many others.

[Brittany]

Jessica,

I am in Utah as well and I am struggling to even find a dr. that has heard of POTS. When I do a google search for drs. in my area that treat POTS, Dr. Cortez is one of the only ones that comes up. Have you found any doctors here that have been able to help with your condition?

[MomtoGiuliana]

Brittany

Welcome to the forum.

Here is our list of physicians

https://www.dinet.org/physicians/