doctorguest

I am not entirely certain that your tilt table test results were negative. Some cardiologists still believe that if you don't faint, you don't have a problem. I suggest you ask your cardiologist details about your heart rate and blood pressure measurements while supine and tilted, including immediately before the test was discontinued. The fact that you fainted right after the test and that you are symptomatic now suggest a disturbance of the autonomic nervous system.

LindaJoy, honestly, I have not seen a serum glucose level of 2 (!). I suspect it was a lab error. I do not believe that this glucose level is compatible with life, so I guess it's either improperly collected specimen or another type of lab error. As to the pre-diabetic state, your doctor probably said that you may get type II diabetes, not type I. Glucose intolerance, pre-diabetes, and diabetes type II are so common in the general population that these most likely have nothing to do with your co-existing POTS. As your doctor probably explained, maintaining a diet free of simple sugars is the key. Additionally, it is not certain whether you actually would develop diabetes, even if you have the glucose intolerance now. If you have a family history of diabetes type II, your risk would be much higher then.

There are other vasoconstrictors out there, but those would likely aggravate your tachycardia. It seems like your best option right now is to start a low dose of a beta blocker and increase as tolerated. You may have to do both Florinef and beta blockers as both seem to work well for some patients with POTS. Good luck!

Jesse1919, not sure where you found a possible implication in the portion of my response that you've quoted. This sentence was intended to answer a question originally asked by the poster on whether anyone had heard about studies connecting "glucose intolerance with neuropathic POTS". There have been no such studies, so we cannot make any conclusions one way or another until there is evidence to support either. Additionally, people seem to be confused with terminology "glucose intolerance" and "reactive hypoglycemia" which are completely different conditions. From my experience, reactive hypoglycemia is seen frequently in patients with POTS - unlike glucose intolerance - but to say conclusively whether there is a connection between POTS and reactive hypoglycemia, a study would have to be done comparing the frequency of reactive hypoglycemia in patients with POTS and in healthy people because reactive hypoglycemia is quite common in healthy women.

Lauren, if tachycardia is the main issue, in conjunction with low blood pressure, I would start with Midodrin first. It would increase blood pressure and decrease heart rate. This may be all you need to feel better. A second choice would be a LOW dose of beta blocker - not sure why he thinks you would need a high dose without trying a low dose first . Good luck!

There are a couple of issues here. First, how bothersome are your symptoms, and how high are your heart rates? If you can function well, and it's only at the request of your cardiologist that you consider taking medications, then maybe starting medications in the first place can be questioned. Secondly, if you do need medications to function better and reduce symptoms, what did the cardiologist say about the anti-arrhythmic drugs that made them seem scary to you? Beta and calcium channel blockers have been around for ages, and have been used for a variety of medical problems. Third, if Florinef is indeed indicated in your case, I would not worry about the liver or kidney damage. Florinef is a different kind of steroid than prednisone, so it does not have the same negative side effects. Also, remember that people with a type of endocrine disorder, called Addison's disease, who cannot produce their own steroids, take Florinef and prednisone for many years. Finally, have you exhausted all of the non-medication treatment options, such as fluid and salt loading, compressin stalkings, sleeping *** head of the bed elevated? Hope this helps you to make a decision a little easier.

I have read probably all studies related to POTS, and I have not seen one making a connection between hyperglycemia and POTS. Hyperinsulinemia is not the same thing as hyperglycemia. Also, many endocrinologists believe that glucose loading test is not that sensitive or specific - meaning that if healthy women are asked to drink a sugar drink, while their blood glucose level is monitored continuously, a percentage of women will have very low blood sugars at the end of the test. In fact, some endocrinologists do not even perform the test for this reason.

Some of the problems that you describe (pain on flexion/extension of the neck, paresethesia in the shoulder and arm) do sound as possibly related to cervical spine issues. Have you had workup with MRI of the cervical spine and EMG to evaluate your symptoms? Autonomic dysfunction is sometimes known to occur after a major surgery, so it may be a separate problem, unrelated to the spine issues. In any case, you need a good evaluation from both neurologist and a neurosurgeon, and I suggest traveling to a major academic center equipped to help you (i.e. Cleveland Clinic, Mayo Clinic, John Hopkins, Vanderbilt).

Yes, blood pooling after meals is a well-known phenomenon. The "adrenaline surge" may be a result of that. What is recommended is the obvious: eating small, frequent meals and avoiding heavy meals filled with carbohydrates. Additionally, taking a small dose of midodrine or mestinon about 30-45 min before meals may be beneficial. For those who can tolerate caffeine without increasing tachycardia, drinking a cup of coffee before a meal may also help. Just a reminder that in healthy people, heart rate may also increase after eating a meal, so it's not surprising that this effect would be exaggerated in POTS.

Hi everyone, As always, I am humbled by your appreciation. To answer some of your questions, this was a conference at a major academic institution, where, you would be surprised, many doctors don't know much about POTS. Melissa and Corina, the presentation focused on POTS only. The reason is that, interestingly enough, I feel that other types of autonomic disorders do get more attention, both in textbooks and clinical practice. POTS, on the other hand, is not given enough attention because it affects "otherwise healthy" young women, so sort of gets brushed off by some as perhaps "nothing serious", which, depending on what you compare it to, may or may not be the case. Regardless of how one views it, patients deserve good medical care and appropriate treatment, as well as greater research interest from the scientists and exploration of better treatment options. If only pharmaceutical companies would be as interested in investigating drugs for POTS as they are for migraine headache, we would all be in better shape with respect to treatment. OK, I'll get off my soap box now .

Hello everyone, Just want to let you know that things are being done to improve education on POTS for young physicians. Today I presented a conference on POTS, and the young doctors-in-training asked me questions and seemed very interested to learn. This was a power point presentation, and I had slides about this site and the many activities that are done by this organization. I also discussed many myths about POTS that exist in the medical community, the stereotype of "young women with normal routine workup" and the notion that some physicians think that they "must be anxious, hormonal or stressed." The presentation was very well-received and generated a good discussion, both among young physicians and the "older" doctors. I think physicians who are currently in training will know a lot more about POTS than previous generation of doctors. DINET certainly plays a major role in this trend. Since I discussed this website in my presentaiton, I am positive that some other physicians will visit this site and this forum for their own education. Hope you guys get to meet these "better educated" doctors soon. doctorguest

Hi lthomas, Lamictal is not something that is used for migraines by most headache specialists. Topamax, on the other hand, is FDA approved as a preventative treatment for migraine. Lamictal is an antiseizure medication and is also used as a mood-stabilizing agent.

EMTs are trained to administer fluids quickly because in trauma situations this is what needs to be done to quickly replenish bood volume and avoid/treat shock. For POTS, it's probably not the best solution because a quick fuid push like this will translate into "a quick push out" through urination. While nobody knows for sure, probably giving it slower, like 1 L over 1-2 hours, is better so that the fluid has a chance to normalize in the appropriate body compartments and increase plasma volume in the blood vessels. The sensation of coldness was probably from the fast hydration with chilled fluid. If you can't go to the infusion clinic or your doctor's office for fluids when needed, consider taking 1g of salt tablet orally followed by quickly drinking 4 oz (about 120 ml) of water. This is equivalent to getting in a quick fluid push of normal saline and works for many patients with POTS (those who can tolerate salt tablets, that is .

If Ativan and Cymbalta seem to work for you, what is your reason for wanting to change the combination?

The sensation of cold running down the leg can be a symptom of radiculopathy - a.k.a. sciatica. It is not related to dysautonomia or MS.

I have not heard about ECT experience in patients with POTS, but I would be cautious and asking many questions, as you are doing. Discussing it with a cardiologist knowledgeable in POTS would be the first step. While I know that there is no research studies on this topic, I personally feel that the potential risks of ECT in patients with POTS may be higher than in healthy people. This is just my opinion, which is not based on any specific research, simply because there is none. I hope you can get answers from your physicians regarding the ECT. Keep us posted!

Hi Flop, No need to apologize. I didn't think you were saying that she should stop BCP. In practice, for some women, migraine gets better with BCP, while for others it gets worse. When a physician considers whether to take someone off BCP because of increasing headaches, it becomes a very sensitive topic that should also involve a GYN because another form of birth control should be substituted. One way to remedy this problem is by treating migraine with medications while continuing BCP.

You can ask your GYN to check your FSH and LH hormones which can reveal whether you are in a perimenopausal state.

While any oral contraceptives can exacerbate or cause migraines, whether to continue or stop BCP should only be determined by the headache specialist. Many women have migraines and many are taking BCPs. The one caution that came out recently in research studies is that if you have a certain type of migraine - migraine with aura - BCPs may not be the right choice for you. All other types of migraine on BCP can be dealt with through appropriate treatment, which may or may not include stopping BCP. Hope this info helps. As I said before, only a headache specialist should determine your situation after a complete evaluation.

Can you see a headache specialist? There are quite a few of them in Boston, so you may not have to travel far. I think once your daily headaches are addressed, you may feel better.

Can you get a referral to see physicians who are more specialized in these conditions than your current physicians? Can you travel outside of your town? Abnormal sleep is not the only cause of fatigue or fibromyalgia, but it is certainly the one that physicians seem to be more familiar with. There are many ways to address fatigue, other than treating sleep issues, which is by no means a minor one. If your fatigue is severe, I am afraid a special diet alone won't help, unless it is a high-salt diet that you haven't tried yet. What you need is a CAPABLE physician who WANTS to work with you. Many doctors unfortunately do not like dealing with fatigue or fibromyalgia because it is complicated and time-consuming. This is certainly not an excuse, but just facts of real life, I guess. Sophia is right: if your doctor thinks that being busy will cure your problem, it's time to move one to a better one!

I am glad the problem was caught early. Hope you feel better

There can be several reasons for this type of pain: 1. As mentioned before, muscle spasms in the neck can cause this. 2. Problems with the cervical disks in the spine impringing on the nerve roots. 3. Migraine. Do you get migraine headaches? If so, there is a huge connection between migraine and neck pain. 4. Occipital neuralgia - i.e. there are nerves that go to the occipital (posterior) region of the head and scalp, and these can cause pain. 5. Other causes that are less likely in your case. If the pain is new or severe, consider calling your doctor. A cardiologist is unlikely to be helpful in this type of problem.

Nina, I am sorry you're feeling worse. Just want to caution you about the heating pad - obviously, if your doctor suggested it, then it's a different story, but... usually, there is inflammation after the surgery, and heat may worsen it by increasing the blood flow even more to that area. Typically, cold packs are better for post-surgery sites. Heating pads work best for muscle spasms.

Just want to add to the excellent advice that you have already received that fear in itself can be as disabling or more than the actual illness. and you're correct to suspect that mental limitation is a big factor here. Hopefully, with the blessings of the autonomic specialist that you're seeing, you will get the courage and confidence to start doing more physically.