StayAtHomeMom

It takes 60 seconds for the most accurate read. Movement can effect it as well. Best way to see if your HR is erratic is to get a holter monitor for a few days. 

Is the rash under clothes or where the sun hits? I get it where the sun touches. I had a biopsy and they diagnosed it Polymorphic Light Eruption. Some autoimmunes can cause rashes on their own. I would suggest seeing a dermatologist. They can best direct you to get rid of it and prevent it. 

Yes. It is usually sharp and loud but only lasts for a few minutes. My 16 y.o. son gets it too. 

Just as an FYI: tinnitus has nothing to do with your hearing. Yes we "hear" it in our ears but people have had the auditory nerve cut and they still hear it. It has something to do with the neurological system. 

I use caffeine to help my brain fog. I have to be careful of the amount. Because too much causes chest pressure. But it is a symptom and will cycle. Overheating can also make it worse. Be patient and try not to worry too much. If you feel like it is worse than what it should be talk to your doctor. Or a shrink. And make sure you are not having something else going wrong. 

I have always had poor memory. Walking into a room and forgetting why I went in there. Also putting something down and forgetting where I put it. Now my brain fog causes a disconnect between my brain and my mouth on top of those things. It is like words and memories can't be found. It can be frustrating and funny. A while back my hubby asked what I was making for dinner. I was trying to tell him corn dogs and tator tots. But couldn't find the word "tator tots". I spent 10 minutes describing them and the bag. Finally I got so mad I just went and got them and showed him. My husband and kids died laughing. And of course so did I. They still make references to it and it has been almost 2 years. 

My chiropractic care I don't feel like it helps my POTS. In theory it could. Personally when I don't go though my body pain is too bad. I have heard of an herbalist in my area that does wonders though. Problem is my insurance would not cover it so until I get a decent amount of cash I can't go see him. He has done wonders for people I know though. 

Congrats on your success. Hope it keeps working for you. 

5 hours ago, Eraena said:

I've been to a cardiologist, and anything and everything heart related came back normal, except bradycardia and hypotension. The cardiologist was the one to see the HR increase. But, my BP did drop (120/76 to 90/60.). He did diagnosed me with POTS, but I knew I didn't have it because I don't have a sustained 30+ HR. It shoots up like someone with POTS, but evens out within a minute or so. (e.g. My HR while sitting is 70's, shoots up to 120-130's, but not long after, heads back down to 70-80's and stays there.)

It could be a reaction to the blood pressure changes. Sometimes tachycardia is used to compensate for BP changes. Have you dug into other dysautonomias?

5 hours ago, potsiebarbie said:

The ENT called it a growth. He is gonna order a different MRI to get a better look. I have appointments with an endocrinologist and neurologist coming up this month and next for unrelated matters so maybe they will be of help?

They may be. If you can get a physical copy of the test you had that showed the growth, make sure you bring that with to those doctors. That way they can look at it and not the report. 

Have you been checked for Inappropriate Sinus Tachycardia? It was something my doctors ruled out in the beginning. 

Have you seen an EP cardiologist yet? Not all of us have but some see them. My local EP told my cardiologist to send me 3 hours away to a specialist for POTS. My TTT confirmed my POTS before the referral though. Glad he did though. 

1 hour ago, Spiders from Mars said:

@StayAtHomeMom Thank you, that’s a great idea! I’ve already got plenty of data. My neuro also said he loves to give them too, so I can go back to him if the EP won’t budge. It’s ridiculous to me to be so eager to pass out just to prove everything. I’ve done 3 holters, EP wants a fourth and I want to scream.  

This forum (which I’ve been lurking around for a while) is seriously saving my sanity.

Depending on the neurologist, they can diagnosis you. My specialist is a neurologist. He specializes in POTS though. He has most of the autonomic testing in his office. It is kind of nice. 

1 hour ago, Spiders from Mars said:

Still struggling to get a diagnosis of hyperPOTS at this point, but these are my favorites so far:

- After 2 months of visits to the cardiologist following a severe syncopal episode landing me in the ER, he looks at me and says, “well, I don’t think you have POTS. I’ve seen people with heart rates from 40 to 150, sustained.” And then, “things like this often go away with age.”

My heart rate DOES range from 50s to 150, stays elevated, and he obviously is ignorant of the criteria of 30bpm or >120bpm. Also, I’m 34 and it’s worsened with cardiac symptoms so yeaaa, not gonna go away dude. He never even checked my pulse after standing. Did put me on .2mg of fludro, which I later found out he thought had only been .1mg, and gave me severe edema and worsened cardiac symptoms.

- GP, same story after nearly a year of visits and developing tremor episodes says to me, all in the same visit:

>> “Maybe this is just how your body is now.” <<

”It’s probably low blood sugar, you should eat more protein.” (Told her it didn’t feel like low blood sugar, but like adrenaline and even after I eat, but sure.)

”It could be stress.” (From being house-bound without a diagnoses or a doctor who cares? Well then, yes.)

“You should make an appointment with a psychiatrist.” (Ditto.)

They’ve both also rolled their eyes and chastised me for taking my pulse rate, so I didn’t dare tell them I also take my blood pressure. Gasp!

So here I am, still without a TTT and a new EP who thinks I MAY have POTS. 

That TTT is what you need. I had the same run around. Do a poor man's tilt table and record the data over a period of time and bring it in with you. Then request a TTT to make it official. 

1 hour ago, Eraena said:

Possible OH. After I stand/bend over I have pre-syncope (lightheadedness, vision dimming, noises sounds distant), but have not fainted, yet. I tried to catch the drop on my BP machine, but instead of going down, it went up (105/58 puls84 to 123/65 puls123). I have seen the systolic go from 104 to 78, and pulse go from low 70's to low 120's. I'm probably just too slow in catching the drop, or my system compensates the drop fast enough.

I have not had a PFT.

How do you not have POTS?

Do you have another form of autonomic dysfunction? Have you had a PFT done?

I don't know know if it is blood pooling, but I have the exact sensation. Seems overloading of caffeine is another trigger for that particular symptom for me, as well as all you named. Usually when I check my HR it is elevated too. Are you taking anything to help your HR?

I would try to have the same doctors within the same "clinic". For instance most of my doctors are within Lexington clinic. That way they won't change the diagnosis. 

I have had testing done on different days.

We are still waiting to do the echo for my son locally and then see our specialist to start him on florinef. It has been 2 or 3 weeks now. 

It takes longer but I would hate to have my testing cost out of pocket. 

I would say not to freak out til you have an actual name for the growth. It could be anything. You may have to a have a biopsy to be sure what it is. 

First cardiologist I seen: I requested a TTT to rule out POTS and other autonomic dysfunction (had been sick for about 9 months at this point and my doctors were coming up with nothing). His assistant took notes, asked questions. He swept in the room and checked my HR (it was 106 when I walked into his office) and had me stand and checked it again. Said it was anxiety and my smoking. In no way did I have any kind of autonomic dysfunction and refused my request for a TTT. I was flabbergasted and livid. 

After I left I started doing a poor man's tilt table every day for a month. Brought the data to my pulmonologist (had a checkup) and my PCP. My PCP sent me to my second cardiologist who did put me on a TTT after looking at my and diagnosed my POTS. 

It turned out ok in the end. But even still I want to write that doctor and correct him. It has been 2 years. Still makes my blood boil. 

The thing that helped my dizziness was dramamine (motion sickness medication). Half a pill every so often. Prior to starting it I had constant dizziness for a few months. It was scary and irritating. Tried the medication and it cleared up totally within 2 months. I have not had it since. It has been 2 years. Occasionally I will feel it coming on in loud noisy places (like a local comic con) but I just take the half a dramamine and it goes away. 

Make sure you check with your doctor/pharmacist so it doesn't interact with anything you currently take. But it has to be worth trying. I doubted my pulmonologist because it was such a simple over the counter medication, but he is older and is a little old school. 

My dizziness was at all times as well. Would get worse with certain video games and being upright but I always had it. It was so bad I couldn't drive and barely could walk. It was definitely my most debilitating and frustrating symptom. Especially since I had lightheadness going with it. Luckily I never fainted. It is kind of surprising when I think back on it now. 

Good luck and I hope you feel better soon. Remember symptoms cycle. It will not last forever. 

I do that as well. I do OK during the day. Get things done slow and steady. Then I get home and sit down. Within 10 minutes I have nothing in my tank and supper doesn't get done. It has something to do with sitting down after doing all day. Usually if I plan on making dinner (my hubby and kids help out by cooking most days) I have to do it before I sit down. If I do I am OK. 

Fatigue has been my worst symptom these last few weeks. I thought it was because of my keto diet taking its toll. But I had a mountain dew today (first one in 6 months) and it still wasn't enough. When I got home from work and sat down, I was done. 

3 hours ago, kkirsten said:

I can’t take anti inflammatory, as it stops beta blockers from working! But I used to and it was the only painkiller to get rid of a bit of it yes.

It’s 100% not gas as I spent the whole of last summer taking tums etc and never went away! 

I don't think mine was 100% gas either. But something in it was helping. Maybe the magnesium. I am not sure. 

In theory (according to the ER doctors 10 years ago) if an anti-inflammatory helps chest pain, then for me it was costocondritis. Costocondritis can be scary but benign. I would be checked out for sure with any chest pain. But it can be something not dangerous. 

Does an anti-inflammatory help the pain? 

I have had lots of "heart burn" they tried to say was acid reflux. Scope came back clear. It has something to do with eating for me because I went Keto in October and haven't had it since. When I say heart burn it is that acid in the back of your throat. Rolaids with gas relief helped quite a bit there. 

How long before your doctor's appointment to get checked out?

In the beginning for me I had a lot of symptoms that seemed terrifying but as time has gone by and the more I have learned they are not as scary. 3 years and counting... it helps that the testing comes back normal and I get to see my tests not just the results. 

I used to have that when I had panic attacks (over 10 years ago) not sure if it is POTS related though. I suspect I have had POTS since I was younger but no proof. Maybe someone else has experience with it. 

On 3/27/2019 at 11:22 AM, MomtoGiuliana said:

@JimL b/c of the gastric band, have you been tested for vitamin deficiencies?  I was found to be B12 deficient last year (I am a vegetarian but it never occurred to me or my doctor this is a risk factor for low B12--as is generally getting older!).  People who have had gastric surgery are also at increased risk from what I read at the time.  I had no idea what a toll low B12 can take on your nervous system.  I had a severe POTS relapse last year that disabled me for 2 months--it included a lot of digestive problems which I had not had before with POTS.  Do you take a B12 supplement?  You may want to have your B12 level tested and consider taking supplements anyway even if you are not found officially deficient.  B12, from everything I have read, is safe to take in large amounts b/c it is water soluble.  Apologies if this has already been discussed elsewhere in the forum with you.

Nutritional yeast is a good thing to add to food to help with B12. Recently was introduced to it. 

22 hours ago, JimL said:

And that's where I am at. Next step, is the why?

That's where I am as well. My doctors don't seem to care why just throw medicines at me. 

8 hours ago, Derek1987 said:

My primary care doctor is clueless on all the stuff that's going on with me. She doesn't even want to sign disability paperwork for me. She claims the specialist should do that. Makes no sense to me. So I don't have an official diagnosis on why I have these issues. I have an appointment with a neurologist on may 3rd. I see my cardiologist April 22nd. Maybe they can look at my latest tests results from my autonomic dysfunction specialist and figure something out.  My tilt table test shows 40/50 beats per minute increase in a standing position. They have detected Rocky mountain in me. My adrenaline is through the roof. My EKG looks messed up. At least I think. I've had multiple syncope issues. Blood pressure is everywhere.

Im learning more as I go along. My dad seems to have the same condition but mild. My psychiatrist talked to some neurologists he knows and says usually when a condition is passed down, it gets worse. My dad's hands have shaken all his life like me. He's on bystolic. He takes medicine for tremors. His hands shake worse now. Mine are getting worse as well. 

Today for me was REALLY bad in how I felt. One of my worst days. But maybe I should hold off on filing for disability until I have something that will be acceptable to social security. I really want to be accepted my first go around. 

That is what I am doing. I have watched people spend years trying. I figure the more diagnosises I have the better I will be. Keeping appointments and seeing the doctors help your case too. It shows you are actively having issues. 

Have you tried any other medications? Maybe if you can get the dizziness to ease you can be upright and it may stop your cycle. Before I knew what I had a doctor recommended a half a tablet of dramimine (the motion sickness medication) and that helped so much with the dizziness. Luckily that is not one of my symptoms the last 2 years. But that first year it was bad.