StayAtHomeMom

10 hours ago, JimL said:

They found it during surgery. The surgeon said it was from a bone spur. Could have been iatragenic. He said he stitched it and put fibrinogen or whatever they do. I still got the nasty headache the next day. It was the worst headache I've ever had. I would have done myself in if I had to live with that. 

I would ask the doctor is there is any imaging that can be done to be sure it is repaired. If you do a search for CSF leak and POTS it is a common occurrence and an easy fix. 

5 hours ago, JimL said:

I was up pretty quickly after surgery and got active. I think I averaged about 2.6 mile a day when I was out. The only complication I had was a CSF leak. What a headache the next day when they sat me up. Holy smokes, I would have ended it there if it kept up. They laid me down head low and it went away and hasn't returned. The POTS thing started about 2 months or nearly so after the surgery. I am at a loss. I am on 25mg metoprolol now and was on a bigger dose over several years. I never had gastro problems before either. I could drink gasoline and pee ice cubes. Nothing phased me. Now I get disgusted just thinking about my favorite foods. Nothing sits right in my stomach.

 

I was supposed to go to a PT for my back but canceled when I got this POTS stuff as I can't be on my feet for extended periods. Passing out on the tilt table really freaked me out and I haven't  felt right since or better put, my POTS is a little worse. 

Did they correct your CSF leak with surgery? If not and you still have one, that can cause POTS as well. 

5 hours ago, JimL said:

Keto is hard for me now. I've gone back to a regular diet, just capping the calories at maintenance and I've been holding at 215. I am 6'5. I was 382 when I started in June of 2017. 

I've been on metoprolol for about 5-6 years, but I take less than I used to. I take 25mg now. I used to take 50mg. Lisinopril I am down to 10 from 40 originally. I probably could go off lisinopril . I have my appointment with the cardiologist next week, I think Tuesday. I went home today as I didn't feel well. I am pretty much out of paid time off and I work for the state too. Unfortunately we accrue sick at half the rate of vacation and it takes forever to accrue sick time. 

Out of curiosity, why is keto hard for you now? I wonder, is it possible your stomach issues started after you came of keto?

Yes, please keep us updated. That may be something that would be worth pursuing. Chiropractic hasn't helped a whole lot for my POTS symptoms, but personally I would be willing to try anything non-medication that may help. Good luck!

I want to start with congrats on your weight loss. I am currently doing keto to lose weight as well (recommended by my mother in law). I have noticed that keto has helped my GI symptoms unexpectedly. Not sure why but it has been a pleasant side effect. 

Second, it sounds like you have a lot going on and it may be hard for the doctors to pin point what is causing what. Surgery and bed rest can cause POTS or similar issues. It can be difficult to be patient while the doctors sort everything out. 

How long have you been on the metoprolol? How long before you get the results from your TTT?

In my research it seems that HyperPOTS seems to be genetic (which to me would be the underlying cause) but I have had 2 urine catacholmine tests done both negative for hyperPOTS. Plus my BP is steady and normal. My son's will drop a bit sometimes but not all the time. I was hoping it had something to do with his growth spurts. When he was 12 he grew 4 inches in 6 months, but he hasn't grown in over a year and his symptoms are getting worse. 

Looking back to my teenage years a few of my symptoms started when I was 12. And steadily added throughout my teen age years. I had both my boys before I was 20 so maybe that helped hold the worst of it off. Fatigue and unrefreshing sleep have always been a big problem for me and it seems that way for my oldest as well. My dad used to joke about the fact I went to bed at 7pm because I needed my 12 hours of sleep. (It was usually 8 pm but the 12 hours is pretty accurate). 

I am thinking along the lines that if we both have it and it isn't hyperPOTS then we have some sort of genetic abnormality that is causing it. No one else in my family has POTS. The closest thing is my mom's side has a lot of autoimmune. But my ANA keeps coming back negative and we are waiting on the results from my son's blood draw to find out. 

On 2/7/2019 at 10:53 PM, Julyrose said:

My word! Thank you all so much for the responses! This is clearly a wonderful community. 

I have had a few holter moniters actually. Heartrate averaged 111 with max at 153 I believe for the only one I remember the results of.  I am not on medicine for the POTS. I have idiopathic intracranial hypertension, so the meds that boost blood volume are contraindicated, and moderate asthma so no beta blockers. I am scheduled to see a cardiologist in a few weeks and am willing to try something new. I have been drinking salted, diluted gatorade all day and felt a little better, also I was able to rest while my daughter was in preschool. This evening, my throat is becoming increasingly sore and I feel like I'm coming down with something. Maybe my body was trying to fight off whatever bug this is?  Or, I'm so overdone from the heartrate stupidness that I'm run down and niw sick. Either way, my husband will be home saturday and I feel much more prepared to get through till then. I'll update tomorrow. Really and truly, thank you all. I was feeling so isolated and afraid. Your understanding gives me strength.

I take metoprolol which is a cardiac specific beta blocker. Talk to your pulmonologist and see if they can suggest something. My pulmonologist is who recommended the metoprolol. I don't have asthma but my main symptom is breathing issues and the propranolol they started me on made it worse. 

On 2/9/2019 at 11:56 PM, ScottS said:

At age 61, having dealt with POTS in its various manifestations since age 13, I can barely watch anything even on TV with the volume turned just shy of all the way down anymore. It's not the content that overwhelms me but the sheer intensity of the lights, camera, bang, boom, loud music, action that gets to me. My head spins. In short order I'll start to feel cornered, then claustrophobic.

Now, here are some oddities. I can watch just about anything issue free, no matter the intensity of the cinematic experience, on my 13" MacBook. My head doesn't spin. I won't, in any way, feel overwhelmed. I can also - thankfully - still listen to music on my stereo. HOWEVER (emphasis intended), I absolutely must - at all times - be sure to keep the SPL (sound pressure level or, to use a less technical term, volume) below a certain point. Yes, that means I actually keep a SPL meter on hand when first setting or changing the volume on my stereo. Anything over around 85 dB starts to set me off on a downward, sensory overload spiral. Here's one last bit of POTS induced weirdness. Excessively loud sounds from even the simplest of household appliances can sometimes start me feeling agitated or anxious. There are even times and days when something as innocuous as someone near me blending a smoothie can set me off. How strange is that? (And where is that cuckoo face emoji when you need it?)

That would be an interested experiment. I wonder if different frequencies and different decibals would cause the trigger. I never thought about it. I may have to try that. 

Basic background: I have been diagnosed for 2 years with POTS. Sick for 3 1/2. My oldest son developed weird symptoms about 6 months after me. He was 12 at the time. Different symptoms but similar. When I was testing myself for POTS I used him and my husband to verify that my BP machine was working correctly. He went from 94 sitting to over 140 standing. My hubby's HR moved only a few points. 

I brought him to see the only pediatric cardiologist in my area when he was 13 and she dismissed my data, ignored his symptoms, did a poor man's TTT incorrectly (had himlay for 20 minutes, sit for 5 minutes, then stood and immediately took the reading), and told us he was dehydrated and to drink 5-6 bottles of water a day. Oh and the diagnosis didn't matter. 

Present: my 16 year old son has tachycardia (dependent on position), slight blood pressure changes (based on position), headaches 2-3 times a week, fatigue, chest pain, dizziness, lightheadness, hot flashes, GI issues, and anxiety issues. He may have more that I just can't think of right now. 

Last summer he had an incident where he went upstairs for something that should have taken 5 minutes. Came back down 20 minutes later. When we asked what took so long he responded I don't know. I woke up on the floor. No one witnessed the event so we have no idea what happened. 

Back in November he had a case of vertigo that last about a day and a half. 

I have been trying to get him in to see my specialist since October. Finally got him in yesterday. The specialist believes I am right, he has autonomic dysfunction. My son had basic blood labs drawn yesterday and next week he goes in for autonomic testing, EEG, and X-rays. 

On the one hand I am glad I wasn't crazy, on the other I know how bad this can be and I am scared for my son. I hope he grows out of it, but I fear he won't considering it has been getting progressively worse. That is why I have been pushing to get him diagnosed. I hope to get some as needed meds for him just to help him on those bad days. 

And his diagnosis brings up the question: what is the underlying cause. We both apparently have whatever is causing our POTS. 

I definitely get the head pressure thing. It is usually a warning sign for me that I over did it and need to go lay down before I have no choice. It does feel like it is a never ending battle. Barely recover and it starts all over. Having my medication has helped a lot but I still have to be careful not to over do it. 

On 2/8/2019 at 12:18 PM, Delta said:

Livedo reticularis?  (The lacy pattern).  Edit:  I actually had this happen to me maybe 20 or so years ago.  I was out walking on a very hot day, wearing long jeans (which I usually don't wear in hot weather, but it was Casual Friday at work) and when I stopped at the girls' room after getting back from my lunchtime walk, my legs, at least above my knees, were, like, striped!  I was only diagnosed with POTS this past summer after four months of bizarre symptoms, but this makes me wonder if it might be related, even after all that time.  I now have very little tolerance to heat.  So much unknown to this stuff. 

Yes!! That's what she called it. But honestly my son's is really scary looking because it gets that dark purple. My youngest son has it as well, but I noticed my hubby has it on his hands (same place as my youngest) and they don't have symptoms of POTS or anything. I get it mostly on my legs but I can get it on my arms too. 

I have looked back and there are things that really make me wonder if their are related. I don't think there is an answer. But have POTS has made me watch my boys a lot more carefully. Tomorrow (hopefully) my oldest will be getting checked out for POTS. He has too many symptoms of mine for it to just be coincidence. My specialist agreed to see him. The pediatric cardiologist I brought him to a few years ago was useless. Only one in my area. 

15 hours ago, plaster89 said:

I guess it is called acrocyanosis.

It is very important to get exercise IMO. When I stay inactive, the symptoms came back with a vengeance. It is also important not to over-do things.

Do you or your son have dilated pupils?

No dilated pupils. Doctor called it something else. If I think of it I will have to put it on here. 

Has his thyroid been checked?

You could have light and/or sound sensitivity. I have sound sensitivity and it can be difficult to deal with. Construction noises and sirens can trigger it on a daily basis. I used to love to listen to blaring rock music, now I can hardly tolerate any music barely on. I currently have the issue of a neighbor (I live in an apartment) that has their speakers next to the wall or something and the bass from movies and music while they are blaring it thumps through the wall. Makes my heart go nuts.

Finding out what the exact trigger is and avoiding it can make a big difference. Good luck. And BTW I haven't been to the theater in years. I would be terrified to try. 

16 hours ago, plaster89 said:

I hope you are both doing reasonably well!

My guess is that I suffered an immune illness 9-10 years ago and that tipped my ANS out of balance. My age is typical of getting dysautonomia/POTS. I have blood pooling if I stand up for a few minutes and have orthostatic intolerance. I am doing much better after lying down for some time, and ofc there is no blood pooling when I lie down. I can say go out and do normal things for a one or two but I am gonna pay the price later so it is impossible for me to sustain normal activity. Currently I try to walk on fresh air for some time every day to improve my fitness, it is probably the best way I can improve my symptoms!

Last year I noticed my son's skin turn purple and "lacey" looking. Freaked me out so bad I brought him to the doctor. Doctor looked at him and the pictures and she said "it is normal, you have it too". She told me the name (can't remember right now) and told me to look it up. Thought it was funny when she compared me to " normal". I think it is odd that his skin will turn such a dark purple but lay him down and it disappears within minutes. It happens from his neck down. I have added it to his possible POTS symptoms and when he sees the specialist hopefully he can explain it. For me personally if I take a hot shower I will get out and my legs will be red. But not the "lacey" pattern. 

Doing something to "force" me to be active has helped. I work at least a few hours a day. On my days off I go to my friend's house. Even if it is just to sit and play cards for a few hours. I have noticed on those days I feel better then if I spend a day sitting on my couch and doing nothing. Neither of those things are physically demanding besides driving to where I have to go, so my fatigue is only slight. 

Are you on any medication?

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

I work part time with amazing flexibility. My job is part of a small business and my boss is disabled as well so he understands. That being said on occasion I have worked 40 hour weeks. I would advise salty snacks, lots of water, and take a break. If you start to feel bad take a minute and just relax. Also listen to your body. 

I am excited for you that you feel like you can go back to work. That is always a good thing. And if you have to back down to part time don't be discouraged. You can always try again later. 

I drink water, vitamin water, broth, and Diet Dr. Pepper (used to be Mountain Dew). Caffeine jolt helps me. But coffee exhausts me. 

4 hours ago, Hutch said:

a hospital I was imminent in that my original ep doctor worked for ordered a 30 day  halter monitor, and the original ep doctor had not even checked it, and still wanted to do a ep study. Iv noticed since getting insurance places seem test happy,  But I really feel sure a ep study is a unnecessary for me, but I swear the impression these cardiologist give is pots is a mild issue so must be something else going on. But I know that’s not true.

POTS can be mild. But if it was mild we wouldn't be at the doctors so much.

My mom mentioned POTS to her PCP and her PCP shrugged it off as it isn't bad if she takes her meds. Honestly I am better then I was 2 years later but I am still not where I wish I was. Meds only helps so much. But if I am careful and avoid triggers I can have a life. Which is considerably better than where I was. 

16 hours ago, bunny said:

@StayAtHomeMom: That would definitely explain it.  Bread does a number on my mother as well.  She doesn't have celiac; instead it's simply the gut bacteria she currently has.  

Yea I tested negative for celiac and food allergies. Slight reaction to some outdoor fall molds though. It is kind of bizarre how much better my GI issues are. 

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. 

5 minutes ago, bunny said:

Gastrointestinal bloating is caused by the fermentation of bacteria in the gut.   The human body is incapable of producing gas in the gut...but the bacteria within can be quite prolific with it, especially if you get an imbalance.  Such imbalances can be caused by illnesses (flu & such), bowel preps for colonoscopies, stress, antibiotics, travel, food poisoning, etc.  I'm willing to bet if you think about it, you can probably narrow down what might have caused this to happen. 

The key to fixing it is figuring out which foods the gassy bacteria are most attracted to and avoiding them for a bit.  As StayAtHomeMom suggested, probiotics can be helpful.  Gas relief meds can help as well.  Any "real" food (ie: not processed, doesn't come in a box) like fresh veg, unprocessed meats, soft (real) cheese, fermented foods, are all good places for this.   Your um..gas.. might be able to tell you what's wrong.  If it's sulfur-y, cut back on the meats.  If it's not, cut back on the sugars, carbs, and fruits.  

Sometimes more extreme means are needed to straighten things out. 

That might explain why my bloating and heartburn issues disappeared when I started Keto. Bread was always my number one culprit for bloating. 

27 minutes ago, Hutch said:

Google ep study they thread a  catheter up a leg Vain into your heart, check to see if you have a extra electrical pathway in your heart, if you do they burn it out.  

You Contradicted you’re self you first said if they keep suggesting it I’d go for it, then toward the end said I personally would shy away from the procedure lol thinking about just flipping a coin    

I meant shying away from ablation. But getting the EP study. Can't they see extra electrical pathways any other way?

I am not sure what an EP study consists of. But if they keep suggesting it I would go for it. More data is always helpful. Even if it just rules things out. POTS is not a disease itself. It always has an underlying cause. Possibly the cardiologist has never seen a person with POTS or doesn't believe in it. 

I started seeing a shrink recently to diagnosis my ADD and OCD officially to help me apply for disability and she is currently in school. She told me she vaguely remembered something about it and said she would have to look into more. And she not only works there she works as a cardiologist's assistant. 

Personally I would shy away from the procedure. But most testing is harmless. Especially if there is staff there to help you if your body freaks out.