doctorguest

You're wise to suspect that your neurologist doesn't understand your condition. Some patients do not tolerate Effexor or any/all SSRIs, but that doesn't mean that the treatment options stop here or that you need a neuropsychometric evaluation. Your best option is to follow through with the referral to the Mayo Clinic.

Failure to sweat on the autonomic testing does not imply an autonomic failure, which is a diagnosis that encompasses multiple areas of severe dysfunction in the autonomic domain. I am sure that if you re-read the report from the autonomic testing done at Mayo, you will not see words "autonomic failure" on it.

Yes, hemiplegic migraine is a problem when considering triptans, but the whole notion that if you reacted badly to midrin, you'd do the same with triptans is not true. Have you ever tried magnesium, vitamin B2 and feverfew as natural migraine prophylaxis? Some patients, especially those with menstrual migraine, have good results with these. Of course, when it has gotten to the point of such frequent and severe migraines, you need "something stronger" first. Magnesium IV or Reglan IV are very helpful and are generally well-tolerated. So does Toradol IV. But some ER doctors are not very well-versed in acute headache management. Can you ask your doctor to order IV medications through an outpatient infusion clinic rather than through ER? Hope you get the help that you need soon.

Why did your doctor think that triptans are not good for you? POTS is not a contraindication for triptan use. In fact, many patients with autonomic disorders are able to tolerate triptans just fine. You may want to start with a low dose, of course, just to be on a safe side. There is now a wide variety of migraine medications, besides narcotics, that can be tried, so hopefully, your doctor will explore some of these with you.

Not to cast a negative light on JHH because it's a fine institution, but I am not sure doing TTT on the second day after colonoscopy, endoscopy, etc. was a wise decision. In reality, TTT doesn't have to be that traumatic if you do it an outpatient basis. Furthermore, it's has been shown that using isoproterenol or nitroglycerin is not necessary to stimulate BP/HR changes in those with autonomic dysfunction because if you have ANS disturbance, it'll show up during a regular tilt in 10-20 min. Also, a large percentage of healthy people will have a drop in BP and an increase in HR if given isoproterenol or nitroglycerin at tilt. I am sorry that your daughter had such a negative TTT experience.

There have been case reports describing women with POTS being on Midodrine during pregnancy and having good outcome. There are also members here who were taking Florinef and Midodrine at conception and throughout pregnancy without any side effects or complications on the baby. While obviously it would be ideal to quit all medications before conceiving, it may not be possible to do so for many patients, so the medications will have to be continued. I am aware of women with Addison's disease who had healthy children while being on Florinef continuously. Discuss your case with a high-risk OB - they have much greater experience managing women with various medical conditions and on various medications than any other physician.

Emily, I am sorry about your bad experience with the medical system. I commend you for doing your own research and being your own advocate. I don't think that the author of the article meant to be insulting to patients - just the opposite - I think she wanted to share with other doctors what she does to educate her patients. You may be surprised, but many patients don't do their own research when it comes to their conditions, and they do look for information regarding their diagnosis, prognosis and treatment from their physician - as they rightfully should be doing, provided that they have a competent physician whom they trust - otherwise, why go to the doctor to begin with?! Information on the internet and in the media regarding health-related issues can be a double-edge sword, although I am always a proponent of patients educating themselves about their conditions, regardless of whether the information that they have acquired is accurate or not. I want them to come with questions and information tthat they have read, and I want them to discuss it with me, so that I can confirm that their understanding on the topic is correct or point out when/if their source of information is misleading. I didn't think that the forum members would get a sudden revelation after reading this article because most people here are very educated about their illness, in fact more so than some physicians are. The article does have good points and good links on how to read and interpret medical research, and I think this is useful information to have.

Madeline, it is a complicated trial and error approach for a complicated disorder. Please, discuss with your doctor what your next step in treatment sould be. I cannot advise you for or against a retrial of Midodrine, but your doctor should have a recommendation for you in this regard. Good luck!

This was brought to my attention today. Enjoy! http://www.memag.com/memag/article/article...p;sk=&date=

Please, let Melissa know that my thoughts are with her and her family. I am glad that her current medical team is interested in her case, and I wish her a speedy resolution of pneumonia and discharge from the hospital.

Patricia, yes, Mestinon is beneficial because it helps stabilize blood pressure and heart rate through enhancing the autonomic nervous system transmission in the peripheral nervous system (try saying this 3 times ). Although Mestinon does not directly increase blood pressure, like Florinef or Midodrine, it is useful in patients with POTS and OH because it prevents orthostatic fluctuations. Madeline, yes, your response to medications and your autonomic disorder can both change over time. It can be very frustrating because it requires medications adjustment, changes or complete change of treatment plan. Your blood pressure probably increased secondary to Florinef, not Mestinon, or it could have increased on its own and not from medications. Hope you and your doctor can figure out a new treatment plan for you!

Mack's Mom, I can only relate to you and others information regarding the issue of Hormone Replacement Therapy (HRT) - which is not the same as birth control pills. Major research studies performed within the last few years have shown that HRT use is associated with an increased risk of heart disease, stroke and venous thrombosis - the opposite of what doctors thought about HRT in the past. Thus, in post or peri-menopausal women, the physicians in the United States currently do not recommend the use of HRT for prolonged periods of time. Short-term use may be more reasonable, but it also has to be weighed against the risks.

Mestinon is a type of medication that should produce effects immediately, but your body may need a few doses to adjust. Mestinon does not increase BP, but rather prevent orthostatic drop in BP, as well as attenuate orthostatic HR increase. It's good that you don't have side effects with your first dose - that does imply that you may tolerate increasing the dose further, if necessary. However, I'd give it a few more days at your current dose before considering increasing it. Good luck!

Your feelings are probably right - the therapist most likely does not understand the severity of fatigue or any other symptoms of POTS. Therapists are trained to deal with the "bread and butter" of psychology, i.e. anxiety/depression issues, not POTS. More likely than not, the therapist has not heard of POTS or if she has, then not in enough details. Familiar problems call for familiar responses - i.e. fast heart rate on a trip "must be" from anxiety in the therapist's mind. Perhaps what others suggested about sharing review articles on POTS may help to continue a good working relationship with this therapist. I would not be surprised if a different therapist has the same attitudes as your current one.

He has MS, but the struggles are similar in many other chronic illnesses. Hope this link works. http://www.neurologynow.com/pt/re/neuronow...#33;8091!-1

It does sound like Aleve may have caused these side effects for you. Have you tried Motrin (ibuprofen) instead? Motrin used to be a miracle drug for my headaches, but I've taken so much of it that it no longer works for me like it did. It sounds like you have "regular" migraines, which can be associated with pain in the neck and shoulders, as well as spasms in the paracervical muscles. Luckily, we have much better treatment for migraines than we have for POTS, although both can be very disabling when they're not under control.

Yes, HRV was the only measure that they looked at. HRV does not refer to the changes in HR in POTS, but rather changes in time and frequency between each heart beat. This parameter is used in autonomic studies. In some patients with autonomic dysfunction, HRV may be reduced. This can happen in POTS patients, as well as healthy people, and this is why HRV is not a diagnostic marker by any means, unlike the tilt table test. You are correct in questioning the value of HRV in accessing autonomic dysfunction and further predicting the risk of heart disease as a result of it. This is why in my previous post I used the word "seem". My personal take on it is that we only scratched the tip of the iceberg. We don't have the answers that we need. The authors did find reduced HRV as a result of breathing in bad air, but ultimately, we don't know how many of these students will go on to develop heart disease in the future and how the numbers would compare to those in general population. I am not aware that any longitudinal studies are being conducted because these are the most expensive studies to do - they require many years of followup of many patients with POTS who are mostly young now. As I always say, I welcome any funding, whether from the pharmaceutical companies or private sources, to get those research projects going .

Have you ever taken Aleve before or was it the first time? If you have taken Aleve before and didn't experience similar side effects then unlikely that you would experience these side effects now. If this was your first time taking Aleve, then it's more possible that Aleve had these side effects on you, although I've never heard that it decreases heart rate. On the other hand, MSG is one of the most common and most known triggers of migraine, along with red wine and dark chocolate.

Katherine and others, I had to read the original article to answer your questions. There is no problem with translation of the article - it's actually written pretty nicely by its authors. Rather, the writer for Yahoo news didn't do such a great job in describing their study. In brief, Heart Rate Variability (HRV) is one of the many measures of the autonomic nervous system function. Decreased HRV is an indicator of the autonomic dysfunction. It has been found that in patients with diabetic autonomic neuropathy and patients with coronary heart disease, decreased HRV "seem" to be associated with poor prognosis. What the researchers of that particular study on air pollution found is that in young college students, breathing in the bad air is associated with increased markers of inflammation (one risk factor for heart disease) and decreased HRV (a measure of the autonomic nervous system that "seems" to be associated with heart disease). I want to emphasize that the study was not designed to actually access how many of these young college students will go on to develop heart disease in the future - this would require many years of followup - but was designed to measure certain markers of heart disease as a function of breathing in bad air. Now, how does that research relate to patients with POTS? The honest answer is that we just don't know enough yet. Heart disease is the number one killer in the country, and whether patients with autonomic dysfunction, such as POTS, have a higher risk of developing heart disease in their older years would require a special type of study which haven't been done yet. Thus, as of today, this question remains unanswered. Should you worry about heart disease in the future because you have POTS today? The simple answer is that there are a few "modifiable" risk factors - i.e. factors that we can change or do something about - that everyone should be aware of, regardless of the current autonomic function status. These include keeping blood pressure below 130/85, keeping cholersterol and lipids in the normal range (discuss with your doctor what "normal" means in your case), avoiding obesity and keeping normal body mass index, doing exercise and stopping smoking if you do smoke. We cannot change what we don't know or what we do have; we also cannot change our genetic makeup or our family history. I don't want to scare anyone, but if you think about it logically, having a disorder of the autonomic nervous system doesn't exactly contribute to being "healthy", to put it lightly. The best we can do is try to do everything we can to minimize the risks that are known to us thus far.

Unfortunately, there have been no studies on hormonal aspects of POTS, despite all the clinical evidence that points in that direction, i.e. predominance of young women affected, worsening of POTS around menstruation, changes in POTS during/after pregnancy and pregnancy as a suspected culprit of POTS for some women. While prolactin can definitely be involved, so could changes in estrogen/progesterone and FSH/LH levels that occur when you stop breastfeading. Hope your symptoms get better soon and your body adjusts to the new hormonal state.

Linda, Unless your doctor instructed you to check your own ketones, you do not need to do this at home. As your endocrinologist said, the ketones are from diet deficient in carbohydrates/simple glucose. You are not "technically" starving, but your body perceives it as such because of insufficient carbohydrate intake. I would suggest a consult with a nutritionist, given your muliple allergies and restrictive diet so that they could figure out how to maintain your nutritional needs. The second question is why do you feel anxious about eating every hour when your blood sugar is normal. Anxiety is such a powerful thing that it can interfere/influence just about any health problem. Your body is designed to "take care of itself" so-to-speak, in a mutlitude of situations and states, and you do not have to worry about eating so frequently, especially since you do not have diabetes and are not on insulin. Rather, when you do eat, it is necessary to figure out what type of food you should be eating to avoid producing ketones. Lastly, having some ketones in the urine is not particularly dangerous in certain circumstances, while it certainly can be in others, especially in "true" starvation and diabetic states. People who are on Atkin's diet often have some (key issue is "some") ketones in the urine, and children with certain types of seizures are actually treated with ketogenic diet, i.e. diet that is designed to induce ketones.

Hi Flop, You're right, we don't have this medication in US, so I have no experience with it and not aware of its side effects. I suppose that if it has similar properties to diphenhydramine (aka Benadryl), that it may also have similar side effect profile. Maxine and Pat, I just want to point out that anticholinergics DO NOT CAUSE memory problems, rather these MAY CAUSE memory problems/cognitive complaints. I should have provided more details in my original statement. Furthremore, elderly patients are more at risk for these POSSIBLE problems than younger patients because "older" brain is different than "younger" one, to put it in crude terms. I also want to say that subjective cognitive complaints are very different than objective evidence of cognitive impairment. Everyone has a moment of forgetfulness here and there, some perhaps more than others. Add a chronic illness, like POTS or NCS, to the mix, and those "moments" can become more frequent. This DOES NOT in any way signify a cognitive disorder or abnormality by any standards. This is why Nina is referred for neuropsychometric tests - to establish whether there is objective evidence to her complaints. Another very important point is that having poor concentration/poor focus is not the same as having memory problems. I want to reassure everyone here that you are not loosing your memory.

Rachel, While you're still have the bruises, take a picture of it. Would be also very helpful if you took a picture when the rash first appeared. Ask your doctor to refer you to a dermatologist and a rheumatologist. You can then share these pictures with the doctors because very often by the time you see the subspecialists, the rash is gone and there is no evidence of what had happened. I often find that the dermatologists can be extremely helpful in narrowing down the diagnosis, if not nailing it altogether based on the appearance of a rash or its biopsy results. Do you have pain in your muscles? If you do, then another possibility, in addition to the usual suspects of the immunologic conditions, i.e. Lupus, RA, Vasculitis, is dermatomyositis.

Hi guys, Didn't mean to alarm everyone with the statement about anticholinergics, but it's true. Mkoven, new generation of allergy medications - zyrtec, allegra - typically do not have the same effect as benadryl on cognitive function. Benadryl, being a first generation of allergy meds, has a potent anticholingeric effect. Usually benadryl is used on "as needed" basis, but if you have a severe case of allergies and your allergist recommended benadryl on a daily basis for extended periods of times, then I guess you have to do what you have to do. Taking benadryl intermittently, like 3 times/week, is definitely better than taking it daily. Obviously, complaints of memory difficulties are common and require complete evaluation from your doctor. These can be caused by various medical and psychological conditions/states (including depression and anxiety). Long-term benadryl use is definitely one possibility in a patient with cognitive complaints, but in the same patient, other conditions can also be the cause or a contributing factor. Pat57, I am not aware that Norpace can cause memory problems.

I'd go with another sleep study and with your "normally abnormal" habits - i.e. coffee, meds, etc. Regarding Benadryl, that's exactly what I meant - taking it for years may cause memory disturbance in the long run. It's a known anticholinergic and all of the anticholingergics taken for a long time are bad for your brain! Do you have to take it? Would be good if you could discontinue it or take it on as needed basis only.