Has any of the doctors suggested having a tilt table test? This is the first test I would ask to have done. I am sorry you are having to deal with this at such a young age, as I know how tough it is, my son is only 15 and going through this.
Do you have anyone close to you that can advocate on your behalf or be at doctors appts with you for support? The internet has been my best tool in dealing with this, finding doctors, chatting with other people who have it or their kids have it. Recommendations and advise from other people. Look on dinet.org or ndrf.org for doctors nearest you., etc...
They haven't suggested such a test. They're not very supportive in finding out the problem. I have been to three different hospitals in my area, and because no insurance, I'm almost always shot down or put on a long wait list. I just have to keep pressing them to do something about it for them to even consider. It frustrates me.
My family always has to take me to appointments, I can't drive myself with this condition, due to my near fainting spells. One of the doctors advised against me being behind the wheel until the problem is corrected, because I could very well have a fainting episode and put others in danger. That bit is also frustrating. The lot of my family thinks I'm just crazy, or calls me a hypochondriac. But being a hypochondriac couldn't be producing such severe symptoms right? At this point I'm willing to take on any diagnosis, as long as someone will put me on treatment or medication or towards a solution to this problem. I don't personally feel it is anxiety, stress, or hypochondria though, to be honest. I don't feel anxious when it happens nor am I obsessed with it. Just tired of having to deal with this.
Thanks for the website suggestions. I hope I can soon get a clear diagnosis and a cure!
It does sound like POTS to me. These are the things that the majority of us are dealing with. Some more severe than others. I agree with Christy, the TTT is the first test you should do. After 30 years of searching for answers, this one test explained it all for me. Some people will get over POTS, others have it for life. I think I've had it since I was about 12 years old and it started with an unexplained illness for which I was hospitalized for and couldn't go to school for 3 months. Every since then, I haven't been the same. As I've gotten older my symptoms have worsened. When you feel so bad, it is hard to help yourself. I agree with Christy it would be nice to have someone who can help you search for answers. Thankfully, my husband helps me. If the Elavil was the blame for your problems maybe it should be reported. That way you can see if anyone else has complained of the same issues. It may need to be one of the warnings on the drug. You need an electrocardiologist. That's a heart doctor who specializes in the electrical system. They are the ones that do the tilt table test and have the expertise in this. Keep in mind that it is considered a rare condition and some of the best cardiologist don't have a clue about it. See if upping your salt helps. Also, most of us have found compression stockings to be very helpful. I also wear a neoprene wrap around my waist. It helps the blood pooling in the ab. It helps with the nausea and dizziness. Hope some of this helps you. Maybe your body will reset itself and you will be okay soon.
It sounds like you are a sister in Christ! He gives us the strength to face one day at a time! From what it looks like here, it doesn't matter whether you are standing or not for your heart rate to increase. Did they suggest the diagnosis of "inappropriate sinus tachycardia"? This is what I was diagnosed with prior to having a tilt table test conducted by an electrophysiologist, who said I had postural orthostatic tachycardia syndrome (POTS) and that my heart was racing when standing so I would not pass out. My heart usually wasn't racing over 100 (tachy) when resting.
Do you ever have spikes in your blood pressure while resting when you are having this tachcardia? If so, have you ever had a fasting plasma free metanephrines blood test to rule out pheochromocytoma, a rare tumor that emits catecholamines that can affect your heart rate and blood pressure adversely? It can also cause sweatiness and headache.
I was given an explanation about the BP medicine I was taking that it would hopefully slow my heart rate down so that my heart rate so that my heart could work more effectively and that it might actually raise my blood pressure! I'm not on BP medicine anymore and recently I tried some that I had been on before, but it didn't work out. Compression stockings have been suggested to me, but my situation is not as bad as yours (holtor last year topped out at 152) and it is very difficult to put those on, etc.... so I don't do that either. I do eat salt when I feel a certain way, like I need it and my urine looks really dilute.
I have spikes in my blood pressure when I stand at times. So, while I didn't test positive for a pheochromocytoma (rare tumor usually on an adrenal gland), various catecholamine type tests have come back high here and there, which I think (not confirmed) means I have the "hyperadrenergic" form of POTS.
See PM for some info!
Oh wow. I never looked into anything about POTS, but I certainly fit in over half of those symptoms that website listed. I always have a horrible increase of heart rate going from sitting to standing or from standing to lying down or vice versa, but sometimes my heart rate will increase at random, even if no change in position is made. A change in position just ensures an attack, but is not limited to. I take my time changing position most of the time now, to not aggravate it.
Doctors are really not concerned about me, it seems. My blood pressure bottoms out many times when I stand, especially. It seems to be the first thing that happens, blood pressure bottoms, then my heart rate increases. It causes my ears to ring and pop.
I've never had any other tests done, though I have requested tests. When you talk about compression, my cardiologist (the last one I went to) told me to put pressure on the back of my left leg when I feel faint. That actually helps tons, though I'm not sure why. Also, getting cool (like having a cold rag on my face or air) helps. Though my body, to me, feels cold all of the time, and I crave warmth, getting warm makes the situation worse with this illness. Its really strange. I feel especially bad sometimes after showers. I can never tell how hot my showers are because I feel so cold all of the time, but when I get out, I notice I have it on so hot my skin is red (and I am a very pale skinned person, so its easy to spot). And minutes after I usually have a bad spell. So I try to make my shower as cold as I can stand it now.
Its basically through trial and error that I control more of these triggers to spells, because I didn't know what the illness was, so I just had to do it on my own. Doesn't ever matter what I eat though...eating is the worst of my triggers, because it isn't choosy. No matter what portion or what type of food I eat, I always get sick afterward.
Does any of that sound familiar also to something related to this POTS or similar?
Yes, Yeah, YUP!!!!! to all of those. Sounds like POTS to me.
Before my son was diagnosed, several doctors wanted to pass it off as anxiety or that he just didn't want to go school. Even after a psychologist said it wasn't anxiety, they wanted to blame it on a mental issue. The psychologist said when doctors can't figure it out, it must be a mental problem. We just kept going til we found the right answers. Don't give up hope, you'll find the right doctor.
About the hot showers, they told my son to avoid them. The opposite is true for my son, he is always hot. During winter he walks around in just shorts. Also, my son was diagnosed by a neurologist, so some neurologists do the tilt table and treat it as well.
Maybe have your relatives read information you found on the internet so they get a better understanding.
Thank you so much for the support, and even more, for the understanding. Nobody understands what I am going through in my family and they make it very tough on me wanting to do things (carry in groceries that are heavy, do this and that, go out places) that I know cause my symptoms to be worse, and acting very unsympathetic when I have my "Hypochondria/panick attack spells". Its so terrible!
Another thing is that I have not been able to work in a year's time. Is there a proper way to go about getting disability or any help like such even if I am undiagnosed? I simply cannot work with such symptoms. I can't even clean my own house much of the time, and today, haven't even gotten up to get a shower (its how bad I feel). Some days prove better than others. But I was told by my family that until they diagnose me, I have no chance of disability, so they 'won't bother' helping with that. They press me to get a job outside and though I want one, I know my body...and I know I am incapable of pulling set hours. Because I am severely symptomatic and it strikes without warning at times. I had to quit my last job suddenly last year because of this, because I'd have to take breaks...and that was before the worst of the symptoms hit. There is really no way for me to have a set hour job unless the boss/owner was very aware of my sickness and have extreme patience with me.
Does anyone here know about how to get help in this way? I don't want to be labeled disabled forever, of course, but I do deserve some financial help with doctor bills especially, until my condition is cured/under control. And right now, its not. At all.
In POTS, they believe the blood pools in the lower extremities- so pumping the calf muscles might somehow act kind of like the heart muscle in that it might help to get the blood moving more or something. I had one cardiologist tell me to pump my fists- I didn't really see how that was supposed to help.
Anyway, you mention inability to exercise without fainting- it's not very often someone faints with POTS... though possible. NCS on the other hand, another form of dysautonomia that can be diagnosed through tilt table testing I believe, is neurocardiogenic syncope- the people who suffer from this faint (syncope actually means fainting).
I will say that I've gotten very high strung at times when I felt it was because my heart was racing so fast. It might help if you have your family read some scientific info on POTS and NCS. Maybe even have them look at some posts here on medhelp of other sufferers!
Also, if you haven't got one already, you may want to invest in buying a shower chair. Then you sit on it for a long time after your shower until hopefully your heart won't go crazy when you stand up. It's usually bigger meals that sets off the tachy with getting up and just walking afterward. There was awhile when I wouldn't get up for about two hours after eating, because of the heartbeat and it could give me a worse headache from standing!
You sure you don't have low iron or ferritin (iron stores)? I know some people think they aren't anemic just because their CBC is normal- but I've had worse tachy just with low iron and a normal CBC!
One of the moderators on here did an extensive post on how to apply for disability. Let me try to find it for you!
I wasn't sure if I could put the link out here without medhelp's permission, so I PM'd her with it- but as long as they leave it here- guess it's alright with them & might be a help to others who run across this thread!
Hiya, sorry to hear you are going through so much and are not recieving the support you need. We can all relate on how it feels to be told there is nothing wrong when we are obviously experiencing so many symptoms.
You mention you have had extensive testing of the heart and several other tests done, but have you had an adrenal hormone panel done? Testing your adrenal hormones and their function. Adrenal issues, as SurgiMenopause indicated, can cause similiar symptoms as POTS.
I was also told by my doctors that coeliac disease can cause autonomic dysfunction in some rare cases. You are having an endoscopy soon which will look for this condition, as well as others. I was found to have coeliac disease when I 'crashed' and this was at the beginning blamed for all my problems until further testing showed otherwise. It is worth looking for.
This said, I would agree with the members above and advise you ask for a Tilt Table Test, this will rule in or out several conditions. It may give you the answers you are looking for.