StayAtHomeMom

5 hours ago, Pistol said:

POTS runs amok in my family - all women have it, 3 generations. My now 14 year old daughter has been showing strong signs of it ( tachycardia, presyncope, low energy at times ) and I had her seen by a pediatric cardiologist as well ( who said she was fine ) and a halter monitor showed "just tachycardia". I have had hyperPOTS for 10 years and mine also "only" shows tachycardia. The trick is that they need to take into consideration that the "just tachycardia" occurs simply when standing. I am going to have to wait until she becomes more symptomatic until I can have her seen by an experienced specialist. Good for you to keep at it!!! I have found that in my family the earlier my nieces and sisters got specialized care the better was their chnace of leading a less limited life. In my case I was already older and had severe POTS symptoms and also had had symptoms in my teenage years that were never addressed. My opinion is that if Teens get diagnosed early and get into specialized care right away ( and with the minor advancement in POTS treatments ) they most likely have a good chance of being less affected by it than we. At least that is my hope and theory. I wish you and your son(s) the very best!

What makes me wonder is the fact that I was the first to get it and I seem to be passing it on to my boys (statically it should be less likely). Does everyone have hyperPOTS like you?

2 hours ago, WinterSown said:

I am sad to hear he has this but am also relieved for you both because now there is a diagnosis. Being believed is the first part of healing. I hope that his doctors are compassionate in how they help him manage the symptoms. I wish the best for your family. 

Currently he sees my specialist and a general practitioner. He hasn't seen his allergist in a few years. The pediatric cardiologist I brought him to a few years ago was a joke. Hopefully now that he is 16 I can get him into an "adult" one if he needs it. 

He starts seeing a therapist on Friday. Hopefully she can help him come to terms with his limits. He already shows some signs. Like he knows what will exhaust him. But honestly I am hoping a lot of his anxiety issues are actually POTS and he doesn't know the difference yet. 

Seen my specialist today in regards to my 16 year old son. It is official. He has POTS as well. Due to his symptoms he wants to start him on Fludrocortisone after he has an echo done. I have never taken this so that makes me a little nervous. They doctor mentioned if need be we can add and switch medicines in the future but wanted to start with this one. I suspect it is because we think he may have fainted once. 

Either way the rest of his testing came up normal. Including his ANA. I have decided at this point to see a rheumatologist or geneticist to see if there is something there. 

His symptoms started about 13 and now I am watching my younger son, who just turned 13, to see if he is going to develop it too. He gets lightheaded most times when he stands up, but he also hates drinking water. No other signs he has it yet though. 

It is a relief to know I wasn't imagining things, but it is also depressing. I know the struggle he has to go through and I wish I could spare him. I hope he outgrows it but I suspect he won't. Only time will tell I guess. 

I get something similar. It is intense thigh pain. Usually the first or second day of my period. I also always have varying pain right above my heels on my feet. I dangle them off the bed at night at it is manageable. The thigh pain I suspect is just low potassium. 

I would bring it up to your doctor so they can check it out. New symptoms should always be checked out. I felt like a crazy person at first but just because you have one thing doesn't mean you can't have another. 

7 hours ago, JimL said:

I don't know what mile marker age is. 

For instance mine started when I was 30. A friend of mine discovered he had diabetes and high blood pressure at 30. My husband started have cholesterol and blood pressure problems at 35. It is just those mile markers of age; 18, 21,25,30,35,40...

POTS is not a disease of itself. There is ALWAYS an underlying cause. In theory if that underlying cause gets under control then POTS will go away. Most doctors don't look. They give you meds to treat the symptom. It is just the way our medical systems work, mostly. 

My specialist isn't concerned with my underlying cause. I am though, and I am always looking for it. Everytime a test comes back odd. Or more recently my oldest son had his autonomic testing and we find out tomorrow if he has it as well. Every time there is new data I go looking for a cause. The only place I haven't tried is a genetist or rheumatologist. Those will be next though if my son has it. 

I would definitely look into the CSF leak angle. If it gets fixed POTS can go away. Nice easy solution. If I could find my underlying and it could be "fixed" I would go running towards that as fast as my body would go

3 hours ago, JimL said:

Compassion is a tough one for a lot of doctors. My wife says with the spate of problems I've been having she'd rather me be fat. Here is a before and almost after. I've dropped another 20lbs from that thinner shot. 

Wow! Congrats on the weight-loss. Out of curiosity did you hit a mile-marker age when your problems started?

Hmmm... odd. I haven't noticed that but I also take a beta blocker. Maybe you need to take something else with it to help. 

Curious, did you start taking the midodrine 3x a day right off the bat? My specialist had me wean on it. Even now I only take it as needed. I can take it up to 3x a day but only when I know when I am going to be on my feet. Did they warn you that you aren't suppose to lay down while it is in your system as well? The only side effect I ever get is the scalp tingling. It is weird but harmless. I have been taking it for about a year and a half now. 

9 hours ago, JimL said:

I didn't have all these problems when I was fat. Now that I've lost the weight I have problems. Go figure. 

A friend of mine had a doctor tell her that the bone bruising she has had for 2 years (after a fall) was because she was fat. She is really heavy and she has had doctors walk in, not even introduce themselves and talk about her weight. She walks out without saying a word. 

6 hours ago, DizzyGirls said:

JimL - yes, it does matter on the time of day.  The later it gets, the worse they get.  The more my oldest (with the vertigo) is up and around, the drastically dizzier she gets.  

StayAtHomeMom - Yes, that's what they are saying.  One doctor even had the nerve to say it was anxiety.   I jumped down her throat in a big way.  No way was she getting away with that one!  Got a message back from her beloved neurosurgeon to see if he can help guide us.  Was your sister in law's autonomic?

Don't know. She has so many things wrong and the diagnosises don't sit well with me. The big thing is she has MS. She also has celiac (blood test positive), small fiber Neuropathy (biopsy confirmed) and gastroparesis (test confirmed). So autonomic dysfunction wouldn't be out of the picture I guess, but she has never been diagnosised with it. When she lived near me they treated her like a hyperchondriac, since moving out of state she has gotten a lot of her diagnosises, but I still don't think they have found exactly what is wrong. I don't think she cares a whole lot at this point though, as long as she can function. 

I hate when doctors blame everything on anxiety or even being fat. A lot of doctors dismiss female's symptoms. Not sure why that is, but it always made me feel like I was crazy. 

I know ADD, ADHD, autism, and tourettes are all on the same spectrum. For some reason I am thinking there are more on the spectrum as well. Would make sense if you got multiples. 

My sister in law has had different types of "seizures" over the years. The first set she would drop what she was holding and stare off into to space for about 5 minutes. Lasted about a year. The second set she would lose consciousness and actually shake. Was very scary. Lasted a few months. Each time doctors said no seizures. EEG was normal. They said it was psuedoseizures. And it was caused by stress. I think the doctors were full of it. 

Keep fighting for your girls. If it is due to autonomic malfunction, then it will hopefully cycle away soon. Hope they feel better soon. 

4 hours ago, andybonse said:

I've upped my fludrocortisone and now I feel a lot better, so far anyways. Only time will tell.

I really bet it's a lot to do with blood volume / pressure. I would love to have the testing facilities to see blood flow in every region of the body when these symptoms are happening, it would make so many questions answered. But unfortunately, it's money and hospitals won't do it. When I win the lottery I will fund my own private research and find a cure! lol.

That sounds like an awesome idea

I have always wondered what they could do to test and prove low blood volume. But the only thing I could find was a CBC that used the red blood count to guesstimate. And I am certain most people RBC wasn't wonky. That would have been flagged right away. 

5 hours ago, dogmom said:

I'm not sure about OCD specifically, but there is definitely a high rate of anxiety with Dysautonomia's.

My research showed studies of lower anxiety than the general population. The biggest thing is separating anxiety symptoms from actual anxiety (mental vs physical symptoms)

A friend of mine described OCD as a type of anxiety. Something bothers you until have have to do it or you are anxious because something was done. She also said that is why the more stress and anxiety you have in other areas of your life the worse the OCD gets. I thought it was a good explanation for my symptoms to not be overwhelming all the time. 

An example is my teenage boys put away my dishes and groceries. They never put it in the right spot. About once a month (or sooner in the case of my silverware drawer) I freak and rearrange my whole kitchen the way it is supposed to be. 

And IF it is related to anxiety it would make sense that our anxiety like reactions could make it worse? 

I may have to bring it up to my therapist. Maybe she has seen a correlation or may want to do a study on it. 

19 hours ago, toomanyproblems said:

I've been following this thread because I'm kind of crashing right and this symptom has come back with a vengeance. When this happens to me I can be gasping for breath for a long time. I try to breath deeply but it's often like I've been running or some other type of over-exertion. One thing I'm not sure has been mentioned is when you breath like this like say in panic attacks, it's hyperventilation and you can't do it very long or you'll pass out. That's why they try to put a bag over your face.  When I do it, it's like I really need the oxygen. Do others feel like this? I've checked my SpO2 during these episodes and it's usually normal although it can be low at other times when I don't feel like this. 

Yes, and when it used to be bad my nose would go numb. I also had one instance where my body curled in on itself. Went to the ER and realized I was panicking. When I settled myself down my body relaxed. Was very scary. I have learned to relax since then. I know it feels like I can't breathe, but the doctors said I was ok and if I don't fight the breathing issue it doesn't get worse. Sometimes I just have to sleep through the worst of it. 

I am curious, I have seen 2 people post they have OCD. And I may have it as well. Could it be related to POTS? Or just coincidence? Wondering how many people on here have it. 

Pregnancy and POTS can be unpredictable. Stress can easily cause a flare. Also if you don't have your underlying cause that could be flaring and causing your POTS to flare. curious (you don't have to answer): what medications are you on that would help influence your decision to terminate your pregnancy?

I am working on getting my OCD diagnosised. It was always a joke until my boss said I have it (he has experience with it) I find out in the next few weeks if it is or not. Personally I don't think I do (or it is mild) but since it was brought to my attention that things I do are not normal, it made me wonder enough to get it looked at. 

Hope you feel better soon. 

I agree call your insurance. They may have red tape you will have to go through but it is possible. My sister in law lives in louisiana. She has MS. Only one doctor for it took her Medicaid so the allowed her to go to a doctor in Mississippi (I think). I am lucky I have a specialist in my state that the wait list wasn't too long. But I may try a autonomic clinic in the future to find my underlying cause. 

59 minutes ago, WinterSown said:

I am not scent very sensitive though I bought a sale candle last week that gave me a whopping headache like from an overdose of cheap perfume. Probably anyone would have gotten headaches from it, I bought a dollar store candle and I paid for it, ugh. All our senses are triggers to alert our nervous system so if any of them are kablooey I'm going to blame dysautonomia until I have proof otherwise. They can all go weird at any level anytime. 

Normal people can have problems with certain scents. I wonder if it is smelling is triggering the malfunction, or the malfunction makes us more sensitive. Does that make sense?

That is kind of interesting. I know I have sound issues, but can't say smell has bothered me. It would suck if it did. My husband likes to cook Cajun and the smells are amazing, even if I can't eat it

16 hours ago, CallieAndToby22 said:

Yea I definitely need rest. I have tried other medications, I worked with a specialist until he retired and we tried a lot of things. 

Have you tried the midodrine? Not sure if it is similar to what you are taking. I take it as needed and it ups my blood pressure. It helped tremendously when I went to visit the Ark with my family last summer. 

3 hours ago, dogmom said:

I'm late to reply, but I've always wondered about this as I had Dysautonomia symptoms and HPV Vaccine (Gardasil) around the same time. 

I think a lot of the correlation, however, is timing. Dysautonomia is highly prevelant in young teenage females which is also when HPV vaccine is suggested.

I am thinking it may be just coincidence too, but some of my research makes me wonder. A significant amount of teenage females pass out directly after having the vaccine. It is the number one reaction. Kind of makes you wonder. 

I would say rest. That's all you can do. Have you tried anything else for meds?