bellgirl

Medication has decreased my dizziness, and I am more able to exercise, because of that

I'm the same weight I thought I would have gained weight, but it never happened...I'm still nauseated, so that has to do more with my GI tract and my dizziness, I guess; I thought being less tachycardic would help me gain weight...

I don't have a lawn, Rama, and to be honest, I used to love to mow the lawn; it was relaxing to me. We live on the side of the mountain now; what little wild grass we have on our property is eaten by the deer in our backyard...lol I have spasms, tremulousness, nerve pain, and rigidity... Endure...I have more neurological symptoms than most, too. I thought I had MS for 13 years, but was negative in my testing...

Thanks...I asked my neuro about the magnesium lowering my B/P, and he said it shouldn't be a problem for me, but I'm still concerned about my left kidney, so I'll ask my internist about this I may end up going to a kidney specialist. Like I need another doctor appointment

Don't have tonsils, so I guess I'll keep my Cpap. It's now my friend

I had MS like symptoms and thought I had it for years; I don't eat ice cream anymore, or drink milk, but I love cheese...that is my weakness. I don't eat it as much as I used to. I don't think any of my testing pointed to autoimmune diseases, but I do have asthma. I'll keep that in mind...thanks Issie

I am researching all the time, but my knowledge is limited, and even though the internet is a wealth of information, medically speaking, (I'm a retired RN), like Rama said, we really can't scientifically do the research needed for a hypothesis that we might have, and everyone does have preconceived opinions. It has helped me to respect physicians all the more, because I was trying to diagnose myself for years, and to be honest when I looked up dysautonomia, I didn't think I could have it, because of my high blood pressure, but I was wrong, so it is more complicated than we think!! I thought I had MS for years, because of all the neurological symptoms I was experiencing, or MG, because of my droopy eyelids, but after doing tests for these, there was no answer. My dad had a cerebral aneurysm, so they kept doing MRI's on me, too, because of stroke like symptoms. This is harder than we think... I have to admit, though, that I have asked for my doctor to do certain testing on me to rule things out, and they respect my opinion on things, knowing I have some knowledge, and am always trying to figure this out with them. So I do have an advantage in that way

I eat brown rice all the time, but have never heard of that Chinese herb...may be worth a try

Sense of smell... I can wear scented lotions, but usually NOT perfume. I have an unbelievable reaction, especially to strong chemicals...good thing, too, because my husband had NO sense of smell, so if the house is burning down, I will save the family....lol... Seriously, when I had my MRA, the dye heightened my sense of smell 10 fold!! The guy that was doing my test had on cologne that smelled nice, but I was extremely hypersensitive after the dye was injected...strange sensation, I'm telling you!! Weird I guess I am not even on the topic. I do have GI issues, but I don't yet know what triggers them...everything in moderation right now Yogurt helps!

Sorry, this post is connected to more of the comments on the first page...I just read the second, now. Still new here Very good discussiion, though! The chicken and the egg theory just came to mind, while I was reading all of this This is why God is, and I am NOT

Does everyone with POTS have a Mitral Valve Prolapse? If the answer is yes, I believe that Dyautonomia is now the catch all phrase for POTS, and now they are trying to put this disorder into subsets, depending on other etiologies, which they haven't quite figured out yet. We need to somehow stimulate more awareness of this problem, and get some doctors who are really interested in this issue. I had an ENT, who did a thesis on Autonomic Vertigo, and was very interested in this. Even though I didn't have any ear diagnosis at this time, other than dizziness/vertigo, he genuinely didn't want to give me up as a patient. He was genuinely interested in this disorder and my well being. Even my Neurologist, although he has not prescribed any of my medication, continues to want me to followup, so it's not that there isn't any interest...I believe it is extremely complicated, and it is making me more respectful of my doctors, knowing this is not an exact science!!

I agree with Rama...The problem is that we are all pretty much trying to classify ourselves, because they don't know the answer to the "whys" yet, and we are asking for our own testing, trying to figure it out for ourselves, and not completely understanding what we are doing either ...but it's all good, because we are our best advocates, and hopefully with all of us brainstorming, we can help one another in the process That's what it's all about; helping one another, and if nothing else, encouraging one another along the way!! There are a lot of intelligent people on this site, and we could actually come up with some answers, the more we converse with one another...Don't give up!!

Just do the best you can...marriage is never easy, but with a chronic illness, it is even harder, and then you enter 3 children into the mix, and it seems overwhelming!! If you truly love one another, it will work out. At least you were able to get a diagnosis, and that should give you some validation. Are you on any medications to help with your symptoms? That should help with fatigue; also, believe it or not, exercise will make you sleep better and should help with fatigue, as well. Start out slow, and show him that you are trying. It also is imperative for your health, even though it seems impossible to do...it helps with the blood pooling, which causes a lot of the problems you are having with fatigue. I will say a prayer that your illness won't be a point of contention in your marriage, that he won't disregard your illness, and that you will continue to get support from those of us on this site that completely understand your plight, because we are also living with this condition. Hang in there...and start to slowly exercise...walking is a good start

I'm going back to two of my doctor's in March, and I will address this and have some blood work done. Actually, my dad's stones, years ago, were Uric Acid stones ( but meanwhile staying off the magnesium)....thanks you guys for the help. Didn't mean to take over Issies's topic; just thinking "out loud" on cyber space...lol. I have so many questions, and have learned so much on this site through others, but to be honest, there are so many things that even the doctor's don't understand. I'm just trying to take care of myself, the best I can, because I am truly getting help, also from the medical community, finally, and feeling much better, for the most part, but I still have dysautonomia, and I have accepted that after 13 years of symptoms , not that I'm ever thrilled to have it...but it is, what it is

I was not sleeping well at all, in fact most of the time I would be up for hours in the middle of the night...yes, this takes it's toll after many years, and it will make your symptoms worse. Have you had Sleep studies done? 30% of people with Dysautonomia have sleep apnea, I was tested and do have it. I'm on a Cpap (continuous positive airway pressure) machine, and take Klonopin .5mg, and sleep so much better!! I also have ambien if I need it. Only taken this a few times. It will make all the difference in the world to get treatment for this. I still have dysautonomia, but it helps immensely . It's changed my life!!

So very sorry for your situation. You need to find a doctor, who will prescribe your son some medications. Could you go back to the doctor, who first diagnosed him? I have sleep apnea, too, and I feel so badly for you. I was literally dying without medication. I hope you can get some help!! Let us know. I believe there is a list of doctor's on this web site in different areas.

Thanks, Rama....now to look up neuropathic POTS...

Now you are making me wonder if the magnesium caused the horrible pain in my side, possible flank pain. It says on the bottle not to take if you have any kidney issues, (which I just read), and I think my kidney's are what caused my hypertension to begin with. I actually, have too much renin/aldosterone so that is why the Losartan, an angiotension receptor blocker, works so well for me!! My dad had kidney stones with his high B/P,; and I am my father's daughter, after all...My pain finally subsided, btw. It just took a little longer than I thought it should with the muscle relaxant...when you've been in constant pain for 5 days, one tends to get a little impatient Hope it's only the magnesium for you, as well.

Bystolic is a new beta blocker; it doesn't have a generic yet, but It saved me from being so tremulous and tachycardic, and didn't cause my blood pressure and heart rate to plummet, like atenolol did. I also take a medication for hypertension, too; I would keep trying to find a balance. It has made such a difference for me.

Medication can be very helpful with this condition. I didn't want to take any either, but it has made all the difference in the world for me. Beta blockers are great for increased heart rate. I have had adrenaline surges, and panic attacks, and there is a real difference between the two. Adrenaline surges are physiological and random, and can be somewhat controlled with medications, but I still have them often. Panic attacks do have a physiological component, but they are also somewhat psychological, too, because they can become worse, depending on how you react to them. I've had two major panic attacks, and taking deep breathes, drinking small amounts of fluids, and sitting down in a quiet place is key in getting past these. I avoid situations where I receive too much input, but sometimes, like when my aunt was in the hospital and I thought she was dying, for instance, I didn't have control over that, which can exacerbate an already overwhelming problem with several issues coming at you at once. This was the time when I had just gotten off a beta blocker to be put on a new one, and I was very tachycardic, so that made it worse. The other time, I was not on any meds at all, and I was late for an first appointment and lost, and frustrated! Hope this helps...

That may be PD POTS - which I have heard is like bi-POTS, with the swings? Anyone else heard of this? It was mentioned in another group, many of the teens are diagnosed with it, which makes me believe it may be hormone related? But I am past menopause, and I don't take estrogen, so now I'm really confused. I suppose it's just the dysautonomia, and sometimes it doesn't make sense?! Help...the more I learn, the less I know

So sorry Issie...you are always the one encouraging others. I was really surprised when I saw it was you. Hang in there. Medications can sometimes throw us for a loop. I was on a Beta Blocker that made me cry uncontrollably for no apparent reason, and then when I got off of it, I ended up with a panic attack!! I take Losartan for increased blood pressure for about 10 years, and never have suffered any adverse effects from it. Used to be Micardis, before it went generic. I would highly recommend it. I also take a long acting beta blocker called Bystolic. It is a new one, and it stopped alot of my tremulousness. I can relate, as I've had stroke like symptoms, too, vision problems, dizziness, slurred speech, brain fog, heaviness in limbs on one side, etc. before I was on medication. Lists really do help when you can't remember things!! Dysautonomia can be the pits at times, because some days are better than others, even on meds. I've had a lot of pain in my side, lately, with nothing to give me relief. Even my smooth muscle relaxants didn't help with that, so I just pray about it, and try to eat right, lots of yogurt! While I'm praying I'll say one for you, as well....

I usually have the opposite problem But there are periods where I am bound up, too...I swear by Flax seed oil. It definitely helps with digestive issues all around, and I believe it is because it acts as an anti inflammatory, and it's an oil, too. Remember years ago grandmothers used to give castor oil for constipation?! Diet helps with this as well. You need to increase roughage in your diet; fruit with skins, spinach, salad, dried fruits, lots of liquids and licorice is really good for this, too! Ginger in capsule form is good for nausea, btw. Phenergan just puts me to sleep.

I agree with Issie where it comes to the Prilosec. I was on that once, because my Zocor for high cholesterol caused gastritis for me, but like she said, when you don't have the proper digestive juices and acids, then your food isn't being digested properly. You have to wean yourself slowly, though, because your GERD will get worse before it gets better. The pharmacist told me NOT to go off of it cold turkey, because it would make it worse! I have trouble with IBS, too, so I have to be very careful in what I eat. I don't eat a lot of meat, and if you have diarrhea, I wouldn't recommend eating to much roughage either. Yogurt with active cultures of bacteria is good, along with flax seed oil, that should decrease inflammation. I would stay away from acidic foods, citrus or even milk, which contains lactic acid. Eat foods that will give you bulk, like bananas, rice, even chopped meat. Potatoes are good, too and they are high in potassium. I know what it's like having asthma, as well. You don't have the energy to do anything when you can't breathe. It sounds as if you need a good cardiologist and pulmonologist, as well, so that you can get down to the problems you are having with your heart and lungs. Being dizzy and having constant ringing in your ears is enough to make you go crazy in itself. That also can add to your nausea. I have that, as well. You have to be persistent, because you are your best advocate, so persevere and don't give up hope!! It sounds as if you need a good physical therapist, as well, with those back issues. I have a son who just graduated with his doctorate in physical therapy. They can work wonders. Don't have surgery unless you absolutely need it. There is always a risk. Try alternatives. I hope you find some doctors who will start to listen and give you treatment. I'm so sorry you are having so many health issues, but like many of us, we feel your pain!!

Wonderful Nothing better than doctor's who listen, care, and believe you, and don't think your crazy