bjt22

In another post, I described my experience with migraine and cluster headache. About three to four days a week, I have just another headache...not as severe, but an ache that starts at the back of my head that just gets in the way of anything I might do otherwise. I usually give in a take something to relieve it. If its going to happen, I wake up with it in the morning. I think this particular headache is just the result of low blood pressure/not getting enough oxygen to my brain.

Oh, absolutely. There are many migraine "variants", and I don't think it's uncommon to have more than one. I personally have two...I have what I describe as the "hyper-stimulated" migraine...one side of head, comes after activity, and is really a very sick all over feeling besides the headpain. Lots of weird neuro symptoms going on at that time, too....light and sound sensitivity, slurring of speech, visual disturbances, etc. Then I have cluster headaches, which are really a migraine variant. These are very, very different....they come in "clusters", meaning they have a cycle. I usually enter such a cycle every two or three years. For me, that cycle can last anywhere from a month to nearly a year. During that time, the headaches seem to come at the same time, every day or night. They bring the most horrible pain imaginable...much worse than any other pain I've ever had in my life, including several completely natural, unmedicated childbirths. They are nicknamed "suicide headaches" for a good reason. Between the peaks of these headaches, I have a constant dull ache in my head all the time. And they are often accompanied by chestpain/angina. Then, ofcourse, I have other, more regular headaches, too...headaches from too little or too much fluid, dropping blood sugars, low heart rate, etc.

Why is she so interested in getting you off meds? I cannot imagine a doctor who would attempt such a "bribe". I think I would ask her if she was interested in learning more about the conditions you are dealing with.

Its a big problem. For me, much of it goes along with the general light headedness. Its one of the reasons I don't go out on my own very often...I've had more than a few very embarrassing incidents. I've forgotten how to use an ATM card, where things are located in a store, how to get out of the store, etc. Last year, I forgot how to vote on election day. As bad as this sounds, my cognitive and memory abilities are somewhat better since I've been on a diuretic and have better control of fluid levels. When I was carrying around at least 20 excess lbs of fluid, I wasn't even allowed in the kitchen as I'd sit there and let things burn. I'm ok now as long as I don't leave the kitchen...its still "out of sight, out of mind".

Right now I'm on seven prescription drugs. I also have a prescription for home oxygen. In the past, I've come off drugs that I really couldn't tell were helping me. I've also been open to more medication during particularly difficult times such as when I'm in a cluster headache cycle. I really don't like taking things I don't need when I don't need them...I'd rather wait until I do. If I didn't take that stand strongly, I'd probably be on several more medications.

I have had so many different types of chest pain that I have pretty much given up on totally understanding what's happening with each and every kind. The variant angina, well, from what I've read, it isn't particularly dangerous if one doesn't have a lot of plaque built up in the arteries. You've recently had an angiogram that determined this was not a problem, so I wouldn't be overly worried. Now, this doesn't mean that you don't deserve relief. Keep working on getting your other symptoms under better control...that has helped with me. If I keep my heart rate down and keep my blood pressure at as steady a level as possible, I have less chess pain. I don't know which drugs you have tried, but beta blockers work well for me, as does Catapres and a couple of other medications in combination.

I don't think we can categorize many things in life as either totally "negative" or "positive". I also don't think we can separate out the medical community from the overall society that it is just a part of. It's going to be reflective...therefore, we can almost bet that some prejudices will emerge when we access care. Being aware of that possibility and recognizing it when it occurs is just being ahead of the game. To pretend that there are never any problems is not a very democratic way to proceed...in fact, I think we all have a responsibility to acknowledge these areas so that we can work towards improvement. Most of us here are women. We know, for a fact, that there are many areas in which we are on the receiving end of certain discriminatory treatment based on stereotyping. The trend in the past half century has been to "medicalize" being female...we've turned normal biology into a disease state. Menstruation, pregnancy, childbirth, menopause, etc., have come to be viewed as medical events that need to be managed. When this type of thinking exists, its no wonder that often, our health problems are viewed through that prism and are just written off as being "female troubles". By being aware that this happens, we can advocate for our own care to make sure we don't fall through the cracks. Likewise, we live in a society that increasingly values "productiveness". This is where we get into class issues....a more "productive" person is much more likely to be seen in the kind of positive way that will enable him/her to get better care to maintain that level of "productivity". We've allowed society to use the notion of increased productivity to justify medical care. Is it any wonder that this attitude shows up in the medical community? I think it would be odd if it wasn't reflected there as it is in every other sector of society. When we start viewing our fellow human beings rather than as units of productivity, I have little doubt this would be reflected back in the medical community as well.

In all fairness, I've been very lucky, compared to many. Saying that there is some discrimination out there isn't being overly critical...we know that it exists in every sector of society, so saying that sometimes we might feel that we're on the receptive end of it from the medical community isn't being overly negative, its just stating a fact. As to the challenges that exist in healthcare today, well, first we have to acknowledge that these problems exist...we can't expect to have them solved otherwise. As I said, in most ways, I've been very lucky...I've never had a single doctor doubt that there was something physical wrong with me. In fact, there were times, over the years, in which I actually resisted hearing them. When the time came in which I was very ill and didn't know what was happening to me, I received respectful and decent care at an ER, and my family doctor, while not totally understanding the condition, knew enough to refer me on and to do it quickly. I was actually given a diagnosis within a week or so of showing up in the emergency room. While I sometimes still get a little frustrated with my own situation, I think my doctors mean well, they just don't always know what more to do and often, like all normal people, they don't like saying "there's little or nothing more that I can do". That's fair...and when I make suggestions, they always are willing to comply. I just wish I didn't often feel as if they've given up or written me off...but, on the other hand, I can appreciate their not filling me with false hope or worse still, using me as some kind of experimental case.

Mine dropped and I didn't pass out, but I was so sick going into having it done that the actual tilting didn't feel much worse than what I was normally feeling. It did make me even more unstable for the next day or so, though, and no one warned me of that, and this was back years ago, long before we were all on-line.

Work at keeping a fever down. Heart rate will increase with a fever, even for "normal" people...taking tylenol, aspirin, motrin, etc., when you feeling it coming is probably not a bad way to go. And ofcourse, keep hydrated. And be prepared for symptoms to be worse for awhile following a viral illness. Always the case with me. Fortunately, though, since all of this really went into full gear, I rarely catch viral infections. Maybe only twice in the past 10 years.

I would like to be stunned on your behalf, but I'm really not, sad to say. I think many doctors like to try to fit patients into preconceived patterns rather than waiting around to see what pattern might emerge. I also think, sometimes, we just plain old get written off if we aren't showing dramatic improvement. I think this is especially so if we are already not working due to disability, don't have small children, etc. The feeling I'm getting is that I really don't have a right to keep asking for further measures that might indeed improve my condition...it just doesn't seem like a lot of effort is being put into it. Not the kind of effort there was there at the beginning when I was younger, had small children, etc. Not the kind of effort I see being put into those who are still working or are younger.

MaryP: Having a family member in the medical field most certainly does give you a kind of access that cannot be replaced. It's amazing to see the difference, let me tell you. All of a sudden, when its discovered, you seem to be part of some kind of club. Probably natural, and I'm sure this happens with other fields and professions as well. However, when its to the point that its about the only way decent care can be accessed, well, then its a problem. I'm not a shrinking violet type, and I think I'm probably discriminated against because of this. I think there are some who really, really like the crying, clinging female that's begging for help. Well, that just isn't me....and apparently, despite stereotypes, it's not most women. We all have heard all the stories and the studies done showing that in the cardiovascular field, men get far superior treatment. Well, a while back, I read a study that said that women were not getting the same quality of care because they did not complain ENOUGH....we're too stoic. Maybe there is something to that...maybe we aren't all whining and crying and acting as if we are dying and its assumed we're not as sick. However, this is a double edged sword, because the minute we start acting that way, there are plenty out there who will write us off as "hysterical".

I was diagnosed after my last pregnancy. I was told in no uncertain terms that I was not to become pregnant again. For me, this was all right....we were certain our family was complete. I now know that during my last two pregnancies, I had autonomic dysfunction that was progressing. Did the pregnancies cause it to do so more or faster? I'll never know. I know these were really difficult pregnancies, but, part of the reason they seemed so difficult was because no one knew or understood what was happening at that time. That said, I'm not sure my body would have gotten through another pregnancy. I kinda feel like we squeaked through the last one in as far as we had a healthy baby and no major, major catastrophes. Ofcourse, I remember what it was like when we were still deciding to have children, and honestly, that urge was so strong, that I probably would have risked much in order to have a baby that I wanted. I think there are a few things you can consider, however. You already have one child. What would you do if, while pregnant, you were unable to care for this child because you were too ill to do so? After giving birth, what if you became unable to care for both children? How supportive is your spouse? Would he be able to take time off work to help? Do you have family or close friends near enough to be of help? Do you have the resources to hire help if needed? Do you work outside the home, and if so, what would it do to your family's finances if you couldn't work for a large portion of the time you're pregnant or for a considerable time afterwards? What if your condition deteriorated to the point that you'd never be able to work again? How well do you deal with things being less than perfect? Could you live with maybe your house being messy, or feeling as if your life was chaotic? Could your spouse live with this? What kind of parent do you expect to be? Can you be the parent you want to be even if it means your physical activities could become drastically curtailed? Could you live with being a different kind of parent than you thought or planned on being? Ofcourse, nothing is for certain for anyone...not only for those of us with chronic illnesses. However, I do think that we need to be even more flexible as parents, and I think our success at parenting totally depends on our being able to be so.

I was very lucky. My family doctor sent me to a specialist right away and I received a diagnosis literally within a week of my showing up in an emergency room.

Ideally, you want a medication that will not put you in the position of having to decide what to do once the attack begins. For me, the combination of a beta blocker and catapres reduced these attacks by about 80 percent. I imagine they help me by keeping my blood pressure and heart rate at more even levels...I think what happens to us at night is that the surplus of sympathetic activity quickly departs once we get quiet and horizontal at night. Circadian rhythms probably play a role, too. What to do when you do have an attack? Well, I have never once gone to the ER in over 10 years of having them. And I'm obviously not dead. You recently had an angiogram that showed your arteries are clear, right? Many don't believe that arterial spasms are particularly worrisome in a person without coronary artery disease. To be on the safe side, I always take an aspirin at the onset of the pain. Heck, a couple of high dose strength aspirin can even lessen the amount of pain. I've also found that the oxygen I keep for my cluster headaches can sometimes be helpful as well.

There is no doubt that our medical system is in dire trouble. Looking back, I cannot believe the deterioration I've seen in the past 25 years. It used to be simple...you had a doctor, that doctor took care of you, and even when referred to a specialist, that doctor still played a very active role in helping to manage your care. These days, this system seems to have broken down horribly. Trying to access decent care now feels a little like trying to find a suitable vehicle at a used car lot....you're taking your chances, and if you don't come prepared, you're going to be screwed. I think much has to do with the overall breakdown in the system as a whole...no doubt, primary care doctors are stretched too thin, we're all being gouged by a for profit system that has little to do with actual patient care and over all, we've just become a meaner, less thoughtful society in the past couple of decades...little wonder that our medical care would reflect this, if you think about it. Access. A couple of years ago, the New York Times did a great series of articles about class issues in this country. One feature was about healthcare received by three individuals who had suffered heart attacks. All were insured, I believe, but their level of access was very different and their financial and social circumstances had much to do with how they were able to access care. They were all treated very differently by the system as a whole. I've seen this, too. As I'm not getting any younger, I've noticed a huge difference in how people are treated as they age. And these days, I do sometimes get a bit of a feeling that maybe, because I'm no longer able to work and my kids are not young any longer, that I receive a different kind of care. Its almost as if I'm sometimes picking up the vibe that "well, if you're not working, and you don't have any really pressing responsibilities, why do you need to feel better?"....well, maybe I'd like to feel better and be more functional just, to, well, feel better and be more functional?

I've only had one, and I had it at quickly after the serious onset of symptoms. Therefore, I was very sick when I had it, so whether or not it made me feel any worse was difficult to tell. It lasted five minutes or so, and during that time, I lost a measurable blood pressure and my heart rate was crashing. The attendant wryly said "Well, I've seen enough" and put me down. I didn't lose consciousness, but I was spacier than ever. This actually worsened for the rest of the day, but again, its hard to say it made me feel much worse than I was normally feeling at the time.

Yes, it would support the notion of spasm, or, as I think happens, too, very quick swings in blood pressure causing the pain. Does your blood pressure ever go high? Spiking a bp and dropping it back down very quickly can be very painful, too. So can a heart rate that does this....same principal, I believe, would cause nitro to be effective as it would keep the bp low and steady and not popping around so much. Have you read much about arterial spasm? A few years ago, I found several articles that proposed it occurred due to a "imbalance between sympathetic and parasympathetic activity"...well, duh...the group that would happen commonly to would be us! By the way, do you happen to have problems with migraine or cluster headache? To me, these go hand and hand with this...and in fact, when I'm in cluster mode, I have the pain in my chest and in my head at the same time. Its always the same pain, just in a different place. And the hand/water thingy....or, the "cold pressor test" is a test that is sometimes done to test cardiovascular reactions to the hand being in cold water. I cannot recall what kind of readings they are specifically looking for in autonomic dysfunction, but usually, if this generates the pain in the chest that one is complaining of, it can be assumed to be due to a cardiovascular cause. I think they were using this years and years ago to try to provoke arterial spasm, but I'm not sure if they still are.

No firm, exact, diagnosis, but following several episodes that perfectly fit the description several years ago, it was assumed that this was what caused certain specific kinds of attacks that I have. When this happened, I did a lot of research and found many studies that linked such spasms to autonomic "imbalance" as well as such common co-morbidities as migraine, raynauds, etc. A couple of years ago, while having a stress test, there were slight indications of this occurring in my ECG as well. I will also confess here that on my own I did a very foolish thing....something I would advice no one else to EVER try at home on their own. I did the hand-in-ice water thing. I literally thought I was going to die. Within the space of a few seconds, this produced the most horrific spasm feeling in my heart imaginable. Kinda removed my own personal doubts, you know? The gold standard of testing, however, for coronary artery spasm is through having several agents injected into the coronary arteries during catherization in an attempt to provoke such a spasm. A couple of the drugs that I am on seem to have calmed these episodes down considerably. Between a strong dose of a beta blocker and Catapres, I get considerable relief. What was occurring several times a day now only effects me periodically...maybe a few times a month for the stronger episodes while at other times, they are much, much milder. As long as one has arteries that are fairly clean, there doesn't seem to be much significance of these spasms. As I grow older, however, and my arteries are no doubt becoming, well, less so, I am a bit more concerned. In fact, this was why my family doctor insisted that I take a statin drug the first time my cholesterol levels tested high....its presumed that statins work quite well at sort of stabilizing any plaque growth making it less likely that a piece would dislodge and form a clot during such a spasm.

So you tolerate this fairly well? I have spasms, too, but have been a little afraid of the nitro. If you have side effects, are they fairly mild?

Are you on a beta blocker or any other similar drug? They can make it difficult to raise your heart rate. Also, many of us don't sweat or have patchy and irregular sweating at best, so this might not be the best indicator for you.

I've often wondered, myself. I've always been very prone to it....ofcourse, this isn't that unusual for women of childbearing age. However, often many of my symptoms were always assumed to be related to anemia, so it did create a fair bit of confusion.

I have what is considered a "profound vitamin D deficiency". I've been taking a prescription 50000 IU dose once a week. I haven't noticed any problems with this.

Obviously, this therapist has never had children. If he things planning on contingencies is a sign of an anxiety disorder, than every mother I have ever known is suffering from one. Seriously....I think I deal with many aspects of my condition because I'd been a mother for a long while before and was very used to planning and making concessions in order to do not only the things I wanted to do, but the things I needed to do. Ofcourse, I guess I could have just ignored the fact that I had kids and gone on my merry way, but somehow, I don't think that would have been a very good idea! I know what works for me. I know what doesn't work for me. I know that if I go out, I need someone with me because I will become symptomatic and quite likely so confused that I lose track of what I was doing in the first place. I also don't drive, because, well, you know, it just probably isn't a good idea when you're extremely light headed, having your vision blur every minute or two, and quite likely to black out. If there's something I really, really want to do, I do plan....that's the only way I'd be able to do it, and I do have to plan to have a couple of days of doing completely nothing afterwards. Now, none of this is like "freaking out" over being someplace and becoming symptomatic....heck, many of us are symptomatic just going to the bathroom and no, this doesn't cause anxiety. We just deal with the realities of our lives....like everyone else does. The reality of my life means that sometimes, I don't do some things because I know how bad I will feel and I choose not to feel bad.

You raise interesting questions. My POTS is due to severe neuropathy. Some of it I think I might have been born with, but its advanced pretty rapidly in the past 10 years. In these past years, I've noticed sensory loss as well. Its not that my hands and feet are numb, its just that sensation has lessened significantly. As an example: a couple of years ago, I sat down here at my computer and noticed a tiny little prickly feeling in my foot. I just casually leaned over to wipe what felt like a crumb off my foot and found that a needle was stuck more than an inch into it. No pain. Pretty weird....I pulled it out thinking "hmmm....this should be hurting". Since then, I've realized that why I don't mind having things such as blood draws, IV's, finger sticks, etc., done is because I'm not feeling them enough to register pain. Hair patterns: I've never grown hair under my arms. I've lost all the hair on my arms and legs. Well, I still have about 20 hairs, literally, that grow on each leg. I have to shave maybe once every three months to get rid of those few hairs. I've lost significant amounts of hair in, um, other areas, too. I've never perspired enough to use a deodorant. Something pretty weird has been happening in the past couple of years, though....in a few places on my upper back and lower neck, I will FEEL as if I'm sweating. There won't be any sweat there, but it feels like I think sweating would feel. As far as I know, I don't have any autoimmune conditions, but I do know that my POTS/autonomic neuropathy is somehow tied into my immune system. I've had some symptoms all of my life. I first had a real increase in symptoms following a bout with bronchitis. A couple of years later, I had the flu while pregnant and this is what really set me off. I improved, but three or so years later, following a simple cold, it all set in again and has only seemed to progress is odd, strange ways. For several years after this, I never so much as caught a cold or virus, despite being exposed on a nearly daily basis. To date, I think I've had two colds since. Metabolic? I had gestational diabetes. First time I was in my early 20's, five months pregnant and weighing 114 lbs. I had it again in later pregnancies. As I reached my middle thirties, my cholesterol levels went up. My blood sugars are borderline...I always run a point or two under what would get me an "official" diagnosis of diabetes. My family doctor thinks I'm a "controlled" diabetic as for years I've been very afraid of diabetes and have eaten as if I was a diabetic. So, is all of this part of a metabolic syndrome, or is the metabolic syndrome just another manifestation of the autonomic neuropathy/dysfunction/failure? I don't think we will ever know....not in my lifetime, anyway.