martiz

Hi group, I have been suffering with a migraine (my first, I think) for days now. Ever since I went off caffeine to prepare for the 5-Indiolacetic (sp?) and catecholamine urine and plasma tests. After testing I have been drinking my tea but the headache would not go away. Barometric pressure is changing as we have storms threatening to blow through. I have been unable to function so I looked through the archives and found a lot of help. Since the doctors offices were closed- I decided to try Klonipin as I had that. I also have amitriptylene (sp?) so I now have 2 things to try. Finally, got some real sleep and I woke up with the migraine gone! I feel like it could come back so I am holding my head very carefully and not making any sudden moves or bending over. I will be making an appt with my doctor to have some other migraine medicine handy and I am filling my Klonipin prescription as I use it for other reasons. I have never, thankfully, ever been a headache person much less migraines. I know we're not supposed to give medical advice but learning what others have done to get some relief was so helpful. I am so grateful. I don't know how people survive with migraines. Thanks all! Marti

@ Chaos - YES! Do not get labelled with ME/CFS is you can help it. Once that is in your chart, you will get little to no help at all. I am getting more help by focusing on my POTS then I have ever gotten for ME/CFIDS. As far as the people on this list, some of them - Klimas, Bell, DeMierlier, Pall, Stevens, Carruthers, Chia - these are the Grubbs of the ME world. There are a few notable names missing which I don't know why - schedules, politics, who knows. Hi McBlonde, No, I would not say that POTS is under the ME/CFIDS umbrella. It is under it's own umbrella of dysautonomia - which is part neurological and part cardiovascular. The syndrome of ME manifests as a set of symptoms - one of those being dysautonomia. Same as category C - gastrointestinal symptoms. This does not mean IBS should be categorized as ME but rather ME includes symptoms of the gastrointestinal umbrella - IBS, poor motility, nausua, abdominal pain, bloating. There can be different triggers for ME/CFIDS - not just viral. Could be trauma, I forget the others. But dysautonomia can also be post-viral, which I believe to be true in my case. Now, you can see why I think there is too much overlap to not be the same illness. MCAD has a very similar list as well.

thanks for all of the links. I search on biofeedback but included the word POTS. I am still learning how to search the archives. I am glad that the program helped you. I think it would help me as well. Not sure that I can afford the program. Perhaps the software to do from home. I would love one or two sessions to learn the basics and then do the rest on my own. I will call tomorrow and find out more (maybe my insurance is one of the ones covered). Thanks again, Marti

Oops, I didn't mean to hijack this thread. Sorry.

Hi Chaos, see below: my words in italics "The problem with broadly inclusive criteria [15, 16] is that they do not select homogeneous sets of patients. The Centers for Disease Control prevalence estimates increased tenfold from 0.24% using the Fukuda criteria [17] to 2.54% using the Reeves empirical criteria [16]. Jason et al. [18] suggest that there are flaws in Reeves’ methodology because it is possible to meet the empirical criteria for ME without having any physical symptoms and it does not discriminate patients with ME/CFS from those with major depressive disorder. Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments and waste scarce research funds [19]. Some symptoms of the Fukuda criteria overlap with depression, whereas the Canadian Consensus Criteria [20] differentiate patients with ME from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments [21]. International Consensus Criteria The Canadian Consensus Criteria were used as a starting point, but significant changes were made. The 6-month waiting period before diagnosis is no longer required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for 6 months. Notwithstanding periods of clinical investigation will vary and may be prolonged, diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact." Again, this criteria aligns with WHO diagnosis criteria for ME and has not been accepted by CDC (yet). Here is the list of physicians and researchers who created this criteria. I think this is the most accurate criteria created thus far: "Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer-reviewed publications, diagnosed or treated approximately 50 000 patients with ME, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi-type process." As you can see, some heavy hitters in this list of participating experts. B. M. Carruthers1, M. I. van de Sande2, K. L. De Meirleir3, N. G. Klimas4, G. Broderick5, T. Mitchell6, D. Staines7,8, A. C. P. Powles9, N. Speight10, R. Vallings11, L. Bateman12,13, B. Baumgarten-Austrheim14, D. S. Bell15, N. Carlo-Stella16, J. Chia17,18, A. Darragh19, D. Jo20, D. Lewis21, A. R. Light22, S. Marshall-Gradisbik8, I. Mena23, J. A. Mikovits24, K. Miwa25, M. Murovska26, M. L. Pall27, S. Stevens28

@ Peregrine: If you notice, you only have to have one of category D (at least one symptom) the only category that is absolutely necessary is the first one - Post Exertional Malaise which they are trying to have renamed as PENE - Postexertional neuroimmune exhaustion (PENE pen′-e) D. Energy production/transportation impairments [At least 1 symptom] Cardiovascular - Orthostatic Intolerance, Neurally Mediated Hypotension, Postural Orthostatic Tachycardia Syndrome, Palpitations Respiratory Loss of thermostatic stability Intolerance of extremes of temperature

Is this the biofeedback center you mentioned? http://www.potstreatmentcenter.com/ Has anyone felt some relief from this program? Marti

Here is the link to his website. I thought the tests that he offered were more applicable to me then other Texas doctors. http://www.theheartbeatclinic.com/servicesoffered.php I cancelled my appt with Dr. Levine to see Dr. Suleman instead based on posts here and the list of tests. I could never get Dr. Levine's office to tell me what tests he routinely runs (I know they couldn't tell me which ones he would run but at least what tests he offers - everyone else has that on their website). Also, my endocrinologist didn't want me to see Dr. Levine. She thinks his exercise program is too strenuous. She wanted me to see a doc in Houston, Dr. Nasir or Dr. Shabani but I liked Dr. Suleman's test list better. Marti

What a great group! @ I Hate Bananas - I was planning on going alone. My son is away at college and I don't want to wait till he gets home. @AShelton80 - if you are a woman - willing to split a hotel room. Really don't want to stay in a Motel 6 but the Holiday Inn is too expensive. PM me if you are interested. I don't have an appt set yet - waiting till my recent endocrine bloodwork is in so I can send them my records. Thinking 3rd week in March but I'm open. I have done biofeedback before for anxiety and found it to be tremendously helpful. I could never relax before I had that experience - just one session. My brain and body did well listening to the tone and my body learned how to relax. Really amazing. Not sure how that applies to POTS. Could you send me a link on the program - I am interested in learning about it. Marti

Hello again, I have contacted Dr. Suleman's office and he takes my insurance so I am ready to set an appt. I will have to stay in the area for the week for possible testing. I will be sending all pertinent tests to his office beforehand but I think he will be running the same tests I have already had. I'm okay with that. I found a Motel 6 in the area which is affordable - I am on limited income. Are there any other usual expenses from Dr. Suleman (other than my copay?) I want to make sure I have enough money to cover my trip. I would be driving from Houston. I would be staying in Plano which is halfway between his two offices. Any tips or suggestions? Marti

Question Do POTS patients have post exertional malaise or reactivated viruses? Here is the most recent (not yet adopted) criteria for ME/CFIDS Oct 2011: International Consensus Criteria for Myalgic Encephalomyelitis A. Postexertional neuroimmune exhaustion (PENE) [Compulsory] Marked, rapid physical and/or cognitive fatigability in response to exertion Postexertional symptom exacerbation Postexertional exhaustion -immediate or delayed by hours or days Recovery period is prolonged Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level B. Neurological impairments [1 symptom from 3 categories] Neurocognitive impairments Pain Sleep disturbance Neurosensory, perceptual and motor disturbances C. Immune, gastro-intestinal and genitourinary Impairments [1 symptom from 3 categories] Flu-like symptoms -recurrent or chronic, activate or worsen with exertion Susceptibility to viral infections with prolonged recovery periods Gastro-intestinal tract Genitourinary Sensitivities to food, medications, odours or chemicals D. Energy production/transportation impairments [At least 1 symptom] Cardiovascular - Orthostatic Intolerance, Neurally Mediated Hypotension, Postural Orthostatic Tachycardia Syndrome, Palpitations Respiratory Loss of thermostatic stability Intolerance of extremes of temperature Journal of Internal Medicine, Volume 270, Issue 4, pages 327–338, Oct 2011 In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

Maybe this should go in a different thread. I have been diagnosed with POTS. But I have also been diagnosed with ME/CFIDS. Researching on this and another forum, I think I also have MACD. I think I also have NMH. I don't think I have NCS, PAF, EDS, Shy Dager Syndrome. Not sure about IST or SVT as I haven't had a workup by a cardiologist. So, my question is this can someone have ME/CFIDS as well as POTS, NMH and MACD - the symptom lists create so much overlap that I find it hard to believe that they are not the same illness. The reason why I think it is a big deal is because there are various treatments that can increase functionality and quality of life. For Example: ME/CFIDS - antivirals, anti-inflammatory meds, high vitamin C, magnesium, LDN POTS - lifestyle changes, increased salt and water, various meds NMH - increased salt and water MACD - H1 & H2 histamine blockers, omeprozole, inhalers Any thoughts?

I was a programmer in my other life. I worked from home as a telecommuter. When I got sick, my POTS symptoms were secondary and minor. My main issues were ME/CFIDS - activated viruses mostly. I had always felt better in a horizontal position - since I had Epstein Barr in college and woke up a different person. I managed to make it through college and got sick with ME/CFS when I was 38. I was bedridden then worked my way to walking a mile a day in the Texas heat. I managed to keep my job until I had a relapse in 2003. The POTS symptoms were and are my primary issues. Even while I was working, I did hours and hours of research after my workday and after my son was put to bed. From 9pm till 11 or midnight, I would research ME/CFIDS so when my relapse rolled around, it was easy to focus on POTS as I was already aware of it. It kills my soul not to work - I was a Type A like everyone else here. Now, I joke that I am a Type "Z" personality! I still have hope that I will work again. I rec'd disability in just under 60 days but POTS was not included as I had not had a diagnosis yet. I rec'd it for two conditions (one of them being ME/CFIDS - still don't know what the other one was but I think it had to do with neuropathy as I have little hand strength.) I have not worked since 2003 - so sad! But my research is my job now.

My endo added Dr. Nasir at Methodist Hospital in Houston to my list. Here is what I have discovered: Dr. Levine - not sure what tests he does - focus is small heart and exercise only. Dr. Nasir - focus is heart , defibrillators and pace makers and it looks like the main testing they do for POTS is the TTT. Dr. Shabani - focus is neuromuscular disorders Dr. Gil Wolfe - same as Shabani - neuropathies and neuromuscular disorders. Dr. Suleman - seems like a mix between cardiology and neurology - his list of services has me salivating.

Hi KatieBug Thanks! That is just what I needed! I searched for tests and testing but didn't see this one! I had extensive endocrine testing today to get a baseline - having to start over with my endo as I had not seen her in a couple of years. Thanks again Marti

My endo added Dr. Nasir at Methodist Hospital in Houston to my list. Here is what I have discovered: Dr. Levine - not sure what tests he does - focus is small heart and exercise only. Dr. Nasir - focus is heart , defibrillators and pace makers and it looks like the main testing they do for POTS is the TTT. Dr. Shabani - focus is neuromuscular disorders Dr. Gil Wolfe - same as Shabani - neuropathies and neuromuscular disorders. Dr. Suleman - seems like a mix between cardiology and neurology - his list of services has me salivating. I think I will go with Dr. Suleman (I pray that he takes my insurance!). Thanks for your input - it means a lot to hear your experience.

I feel ready for my appt with my endo today. There are so many experts here and I am very grateful. I have read through page 10 of the forum (not every post!) and I am grateful for the studies that are linked and the biochemistry that is explained. So thankful that I found this group! Feeling hopeful again! Marti

Hi Group, I have an appt with Dr. Levine for mid-March. Seeing an endocrinologist today to try to get a baseline level of hormonal testing to make that appt worth the drive. Doing some research, I see that there is a Dr. Gil Wolfe and Dr. Amer Suleman. I have been diagnosed with POTS (several times) and have had the following autonomic testing by Dr. Shabani but he does not go further than these tests - does not determine why type of POTS or does any testing to determine triggers/causes and no medication. Sweat Test: For this test, small plastic capsules are attached to the arms and legs. A machine is used to stimulate the sweat glands and measures sweat production. You may feel a slight local burning or tingling during this test. Heart Rate during Deep Breathing (HRDB)Test: This test measures your heart rate variation during deep breathing. You will be asked to breath deeply and steadily in a rate of 6 breaths/minutes guided by a moving green light. Valsalva Test: During this test you blow into a plastic tube for 15 seconds hard enough to produce a pressure of 40mm/Hg as indicated in a hanging watch that you will be asked to watch. This test measures your blood pressure and heart rate response to valsalva maneuver. The Tilt Table Test: After lying on a table for the first part of the test, you will be raised to a nearly upright position. You will be secured to the table so you cannot fall. The test will measure your blood pressure and pulse during different positions. Question: Should I instead see Dr. Wolfe or Dr. Suleman or keep my appt with Dr. Levine? I have tried Dr. Levine's exercise protocol and don't have a problem being on a scaled down version but I know I will never be able to reach his targets without risking a relapse of my ME/CFIDS. Mostly, I am looking for a bit more refinement of my diagnosis through testing and some general medication suggestions. Then next step would be to find someone locally to go through the trial and error with me. My endo might be able to do that and I have an appt next Friday with an internist who is supposedly open to learning about conditions that she is not familiar with. Any advice? (I have read all of the posts about Dr. Suleman - could not find any for Dr. Wolfe). Leaning towards seeing both at some time but not sure insurance will pay for that so I hope to maximize the drive/expense. Thanks for any help! Marti

Thank you both for the responses. I have printed everything in list form. I am prepared to only get the basics. Thanks again, Marti

Hi everyone, I'm new here and thought I would introduce myself. I have been given a diagnosis of POTS but no other information regarding type or cause. I have had ME/CFIDS and Fibro for 12 years and while POTS was probably part of that, it was secondary. As I get older, the POTS is becoming my biggest issue. I have seen an electrophysiologist and had some autonomic testing done. I have seen a good endocrinologist and had the basic tests run (TSH, Free T3, Free T4, Vit D, etc). I had a stim test but it was done incorrectly. I have not had renin/aldosterone. My appt with the endo is on Thursday and my appt with Dr. Levine is mid-March. Would anyone be willing to share a list of tests that I should push for to be ready for my appt in March with Dr. Levine. Would using the list that lemons2lemonade shared that Dr. Goodwin conducted be a good place to start (as a wish list - I know I won't get the whole list as I am not going to a Mayo doc or even an autonomic center). Moderator: I hope it's okay that I posted this link here. Trying to make it easier for people to find the post for reference. http://forums.dinet.org/index.php?/topic/19436-initial-tests-ordered-for-me-by-dr-goodman/ I have searched the forum and googled this and I'm a little overwhelmed. Many thanks for any help offered! Marti

I would be very interested in this. I purchased a g-suit last year and I think it would have been helpful. Mine was used and it leaked so, I sent it back. Also, it was a little too long (I am short). AND, the band that goes around your back end to keep the abdominal airbag pressed in aggravated my spinal stenosis/sciatica. It was a little bulky but I would have worn it if it helped. The nice thing is that the one I had (an old military version) was cotton so it wasn't as hot as compression hose and the areas that sweat were exposed - back of the knees, groin, etc. The problem that I see is that most of the blood pooling for me seems to be in the abdominal area and I don't get much pooling in my feet (some in my legs) so regular compression hose were not that helpful. Dr. Medow did a webinar on hypoperfusion and he felt the perctanges were greater in the splanchic area so I am not sure how effective these suits are. Here is link to the webinar: http://www.cfids.org/webinar/oi-march2010.wmv and to the slides http://www.cfids.org/webinar/oi-slides-32510.pdf If you notice on Pg 19, the thorax area loses 30% and the splanchnic gains 30% then the pelvis and leg are at about 10% (the SAME as the controls). then page 35 - the brain loses 20% blood flow during TTT. This is why I don't wear compression hose anymore (they're too hot and that is a trigger, they're too expensive, too hard to get on - leaves me exhausted and for the number of times I have to go to the bathroom - not worth the hassle). Then to see these types of numbers makes me wonder if these POTS doctors keep up with the research. And this research is from 2010!

Rituximab http://phoenixrising.me/archives/1977

This is an interesting thread. I am still learning but I looked at my overseas pharmacy and found that I can get aldactone in 25mg or 100mg. Unfortunately, I just ordered and should get my order very soon (today or tomorrow) and I won't be ordering again for 3 months. I will add that to my next order and test it. Should I get the 25 or 100 and for how long should I take this? Marti

My endocrinologist is Dr. Vivian Rodriguez and she is POTS friendly. I had a pretty good neurologist - willing to try to help but I changed my insurance and can no longer see her. She was with Kelsey Seybold - Dr. Mariana Karpinos. I see Dr. R. Thursday and I am asking for a full endocrine workup in preparation for my March appt with Dr. Levine. I am going to ask her for a referral to a neurologist. I would love to go to Baylor. I need to research neuro's at Baylor. Can anyone tell me who NOT to see - I would hate to waste my time with someone that is not POTS friendly.

I have tried the Levine protocol and was better while I was on it but life got in the way. I was never able to start at Day 1, Month 1 so they sent me a Pre Month 1, 2, & 3. I am restarting Day 1 of Pre Month 1 (again!). I see Dr. Levine for the first time in mid-March. Not too thrilled as I hear his bedside manner is lacking. That "grinch" thing is upsetting. I probably do fall into the deconditioned though as I was ill before the POTS got really bad with ME/CFIDS and Fibro. I think working your way to whatever level you can without heading for a relapse is wise.