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Kathy_Ireland

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  1. Hello Janet M and Jonathonireland ( I wonder if we are related:D) I'm also in Ireland and I think that it would be great to have a support group here. I'd also be delighted to add anyone to my msn to chat sometime so PM me if anyone is interested! I'd say that putting messages in Irish CFS support groups would find lots more POTS sufferers too. It would be great to have some POTS friends but also to be able to have a network of Irish specific information on the condition,like what drs are understanding etc. Nice to see you both here
  2. Rene , I dont know you but I just wanted to let you know that I'll be thinking of you and will say a prayer that you'll get well soon. I'm so sorry to hear you're going through all this.
  3. The CFIDS association are having a live talk with Dr Medow on OI in CFS and the research of his team in New York Medical School into OI. I hadn't seen it posted here so I thought you all might like to made aware of it.Participation is limited to 1000 people so if you want to take part you need to register now at the link below to make sure you get a place. Apologies if this has been posted before.
  4. Hi Macks Mom and everyone else The test kit is available here : http://www.vipdx.com/ There is a Q&A on XMRV here : http://www.wpinstitute.org/xmrv/xmrv_qa.html If anyone would like to watch the Dr Oz segment on XMRV CFS it's here : http://www.youtube.com/watch?v=_WEUC7hRXzM It's exciting news for all of us with a CFS diagnosis. The test is not available to anyone in Europe yet unfortunately. We all just have to hope that the research going on now replicates the findings of the WPI study. My fingers and toes are crossed. Kayjay: You can't pass it on like you would a flu or regular virus. It's a retrovirus so it can only be transmitted by bodily fluids eg. blood to blood contact like HIV. They are unsure about whether it can be passed on by sexual contact and they think it can be transmitted from a mother to a baby in the womb. I think they aren't quite sure why one person gets ill with it and another does not. That said ,they haven't establish a definitive causal link between XMRV and CFS at all yet. It might be something thats just a part of the puzzle for some people but not for others.
  5. I found Florineff a bit of a disaster too and while salt tablets make me feel worse I find including alot more salt in what I'm eating makes me feel better.I'd love to know what exactly causes the period boost. It makes such a difference to me in terms of stamina and symptoms that if I am well enough that is the week that I'll invite a friend up or plan to do something small extra. I wish we could find out what it was. Maybe now that there's two of us on the case we will! Have you ever tried contraceptive pills? I've been very tempted to try them and see if they'd make a difference but I'm aftaid of the side effect backlash. "Secondly one form of POTs is caused by impaired catabolism of angiotensin II - which fluctuates and is highest before menstruation." I'd love to know if this is a part of puzzle. No doubt it is.So many things seem to influence blood pressure and I'm starting to believe that science neither knows nor care a great deal about what they are. If you ever find an answer in the future please PM me and I'll do likewise.
  6. Hi dsdmom.I have had shingles since getting POTS and was treated with an antiviral that went under the brand name Zovirax.There was a cream and a course of tablets.I had no I'll effects from the treatment at all.It not impact on my POTS what so ever either.The only affect was that it helped my Shingles.I hope that's reassuring and that you recover soon. I would be very interested to hear how POTS patients have fared with Tamiflu too.From what I have heard it can be very severe on the system of healthy and cause alot of GI problems including very bad vomitting.
  7. Hi everyone. I am a homebound body too and I can fully understand how you're feeling kitshalleen. I'm 29,single, hate the loneliness of being ill and I even knit/crochet sometimes too ! The isolation of physically not being able to go out into the world is bad enough but also feeling so sick that you can't have people come in to visit you or that you can't chat on the phone with friends is just horrible. It's very difficult for other people to understand when you say you aren't able for those things too. It makes hanging onto any connection with the outside world so hard. Like everyone elses here I find the internet is a great way to communicate when you are well enough to use the PC. It puts so much less pressure on you than real life face to face interaction.When you're online you can lie in whatever awkward position you need to while you chat and no one cares if you're sweating bucket loads from the effort or if you've washed your hair that day! Considering that there are quite a few of in this position would anyone else be interested in setting up a chatroom where we could chat and meet other people like ourselves? It should be pretty easy to do. If not,I'd be delighted to share my MSN or facebook with anyone who'd like to talk sometime. Just PM me Oh btw... is the nickname kitshalleen from the Irish Caitilin/Kathleen?
  8. I think that this is the part of the article from Ramakentesh that Sue was refering too : Is this right Sue ?
  9. I don't think the transcript will be available on the site until next week. However as I was logging off I noticed an option to save the transcript so I did. I will copy and paste it here for those who did not get to log in for the real time chat. If me posting it is inappropriate or against any rules I apologise to the moderators and ask them to please delete my post. Cleveland_Clinic_Host: Today's Live Web Chat with Fredrick Jaeger, DO will begin at 12 noon EST. Dr. Jaeger is an expert in Autonomic Disorders and will be answering a variety of questions about the different forms of it. Please submit your questions by typing them below and then clicking 'Ask'. Cleveland_Clinic_Host: Welcome to our Online Health Chat with Fredrick Jaeger, DO a Cleveland Clinic staff cardiologist and Medical Director of the Syncope Center. Dr. Jaeger, thank you for being here with us today. Speaker-_Dr__Fredrick_Jaeger: Thank you for having me. Cleveland_Clinic_Host: We have received a great amount of questions so far. We will try our best to answer all of them. Some of your questions may already may have been answered, please be sure to keep track of all the answers or view the chat transcripts page during the chat. ConcernedDad: Dr. Jaeger, Since may 2009, my 16 YO son is presenting with dysautonomia. Among other problems (persistent headaches, dizziness, joint pain), he suffers with severe memory loss/amnesia symptoms. He can forget memorable events that happened minutes earlier, hours earlier, the day before etc. Major problems retaining and following schoolwork. Through last year, a solid student. All neurological work-ups (MRIs, EEGs, LP etc.) are clean/normal. Is the severe memory loss/amensia described above consistent with the "brain fog" and "concentration" symptoms that are described in various dysautonomia brochures and websites? Can it be that severe? Thanking you in addvance for any assistance you can bring on this particular symptom of dysautonomia. --Concerned Dad Speaker-_Dr__Fredrick_Jaeger: Sorry about your son. In general, the cognitive impairment in patients with dysautonomia is usually described as moderate although occasionally I will see someone with severe impairment. I assume he has had neurocognitive testing. Our neurologists frequently peform a comprehensive evaluation to look for any structural neurologic disease and as a cardiologist I will attempt to treat the other blood pressure and heart rate components of the dysautonomia. If you are interested in further evaluation - we would be happy to see your son. Rpap: I have POTS (undiagnosed for 33 years) and debilitating fatigue. Are there any new treatments or meds that could help me keep from laying down on and off all day? By about 7 PM I'm in bed for the night. I do walk/eliptical 3-6 days/week. I've tried adderall xr,wellbutrin, various antidepressents, flurinef, provigil (in excess of the max dosage), etc. Nothing helps with the unrelenting fatigue. Speaker-_Dr__Fredrick_Jaeger: The medications you listed are certainly common ones prescribed by our group and neurologists who treat POTS. Speaker-_Dr__Fredrick_Jaeger: The drugs like metinon have also been used in patients with POTS who have evidence of small fiber neuropathy. Speaker-_Dr__Fredrick_Jaeger: The exercise that you mention is probably as important if not more important than any pharmacologic regimen. Speaker-_Dr__Fredrick_Jaeger: You should continue daily if possible - it does not have to be extreme or to the point of exhaustion. smartN: My question follows: have been evaluated and tested by many neurologists in the year after my left total hip replacement (April 2008)--with no resulting diagnosis for blurred vision and poor balance. Only daily vigorous physical exercise has helped to alleviate these symptoms temporarily. After my second total hip replacement (June, 2009) my periods of blurry vision and poor balance have increased from early in the day and I experience these symptoms throughout the entire day. I have continued with my exercise program, which lessens the symptoms. Here is my question--what, besides daily exercise, should I be doing next? I've done some recent reading on dysautonomia and some of the symptoms sound like what I have, and am, experiencing. Speaker-_Dr__Fredrick_Jaeger: You should have comprehensive dysautonomia testing Broken_shell: I experience symptoms of dysautonomia but do not have large fluctuations in heart rate or blood pressure. Is this common? I have heard that the symptoms are related more to distribution of blood flow that are not readily analogous to peripheral BP measurements. What is a good target BP for patients with orthostatic intolerance but not orthostatic hypotension? Why are the symptoms of dysautonomia so pronounced during the first half of the day and usually less severe in the late afternoon and evening? Why do the symptoms of dysautonomia and the body systems they affect vary so much from day to day and throughout each day? Speaker-_Dr__Fredrick_Jaeger: The hallmark of POTS is an overactivity of heart rate in response to exercise or common daily activities. This may or may not be accompanied by abnormalities in blood pressure. Speaker-_Dr__Fredrick_Jaeger: There is no target blood pressure other than to try to keep it in the normal range. Symptoms of dysautonomia can affect people at any time during the day. LRHays: Is it true that POTS can go away? Speaker-_Dr__Fredrick_Jaeger: It has been estimated that up to 80 percent of patients with dysautonomia such as POTS can have spontaneous resolution of their symptoms. Speaker-_Dr__Fredrick_Jaeger: However, the interval to elimination of symptoms is extremely variable and can be as short as months or as long as years - or rarely decades. Dmeri6: I have had POTS for three and a half years with severe fatigue. However, recently I have been have energy level swings. Either I'm exhausted or have an overabundance of energy. When I'm tired I have a very strong appetite and when I'm full of energy it's hard for me to anything down, and eating certain things just make my energy burst worse. I believe this is my body producing adrenaline to increase blood flow. I was wondering if you had another theory or any suggestions. Also, my hands and feet can get red/purple and splotchy. Is this a sign of blood pooling? I don't notice it anywhere else. Speaker-_Dr__Fredrick_Jaeger: The discoloration or mottling of the extremities is a common symptom of dysautonomia. It could reflect lack of appropriate blood vessel constriction leading to venous pooling. Speaker-_Dr__Fredrick_Jaeger: The fluctuation of your energy levels certainly could be related to over activity of the adrenaline system - and if you have not had blood tests or urinary tests for adrenaline - they should be performed. LRHays: I woke up with a headache, 2 years ago, that has yet to go away. I do have many minor symptoms, but the headache is the worst and most debilitating. I was diagnosed with POTS last October and was told the headache would go away as I got the POTS under control. However the headache hasn't changed, and has even been getting worse. I've tried everything (drugs, alternative medicine, etc). Is this common for POTS patients? Could I be misdiagnosed? Speaker-_Dr__Fredrick_Jaeger: Headache is extremely common with POTS patients. Many times the treatment of headache requires a different protocol than the POTS treatment. Here at the Cleveland Clinic I work closely with the headache neurologists who have an extremely high success rate in treating the headache component of the dysautonomia. Speaker-_Dr__Fredrick_Jaeger: Occasionally but not always drugs like beta blockers and the serotonin re-uptake inhibitors can be helpful for both. Sorkvild: I am a recovering POTs patient and while most of my symptoms have improved, one that shows no sign of improvement is my altered vision. Since having POTs, images I see in the foreground and background of what Im focusing on are doubled, with the distance between the two images being dependent on how close they are to me (closer to me, farther apart the objects are). I also have faint double vertical vision which is mostly apparent while looking at small bright lights in dark areas. I also have what appears to be permanent floaters in each eye, each having the exact same shape and size since having POTs. Finally, I have "visual snow", which is probably the most frustrating problem right now. Thank you so much for taking the time to look at my question and I hope you can offer some suggestions. Speaker-_Dr__Fredrick_Jaeger: visual disturbances are frequently reported. Although by your description they may be separate from your POTS symptoms and you should see a neuro-opthamologist. Certainly get appropriate imaging of the eye and the part of the brain that controls vision. There are many disorders that affect the eye besides POTS - including a long list of neuromuscular diseases - you certainly should be evaluated. ykthomas: How can I explain this disorder to my family doctor and other medical personnel? It seems no one has heard of it. Speaker-_Dr__Fredrick_Jaeger: dysautonomia is becoming frequently recognized as a significant health issue but unfortunately has not been routinely emphasized in the training of young doctors in the past. Speaker-_Dr__Fredrick_Jaeger: Many medical centers now are establishing autonomic treatment centers. There are also many web resources available for your family doctor. I will post these at the end of the chat. Cleveland_Clinic_Host: For those now joining us, we are currently chatting with Dr. Jaeger, who is taking your questions about Autonomic Disorders. If you would like to view what has already been discussed, click on the transcript button on this page. ken870: is there a medicine that can help with blood pooling and if not what can be done for blood pooling in your stomach and legs and feet. Speaker-_Dr__Fredrick_Jaeger: The best treatment for blood pooling or what we call venous pooling is daily regular exercise and compression stockings. Speaker-_Dr__Fredrick_Jaeger: Medical options include blood volume expanders such as Florinef which can improve blood vessel constriction, reflex responses - also beta blockers and Mitodrine are helpful in this regard. anlaki: I have an appointment with Dr. Shields on November 23, 2009. I have already had the tilt test, QSART test, and EMG. I was diagnoised with Ehler Danlos and know that when I am standing I do not get enough blood flow to the brain. Will Dr. Shields be able to do the blood flow test and transdoppler test that you would perform? I tried to get in to see you on the same date, but you are out of town. Tilt test showed excessive heart rate QSART test showed no response at all sites, and emg was borderline. Speaker-_Dr__Fredrick_Jaeger: Dr. Shields is my colleague in our center for syncope and autonomic disorders and has considerable expertise in the evaluation of patients who have the problems that you are describing. He routinely orders the blood volume test and other cerebral flow tests. I would suggest that you submit your records to his office and perhaps touch base with him or his nurse to preschedule any additional testing that may be required. MomofDan: Please explain why low blood volume, or hypovolemia, is a common symptom of POTS. In what way does the ANS regulate blood volume? Speaker-_Dr__Fredrick_Jaeger: The reasons for low blood volume in patients with dysautonomia are many. Young patients in particular may have inadequate salt intake or have extremely efficient kidneys that eliminate sodium resulting in hypovolemia. Persistent tachycardia is also frequently associated with hypovolemia because of its effect on renal hormones that control blood volume. love4kids: What tests should be done to see if I really have POTS?? Speaker-_Dr__Fredrick_Jaeger: The tilt test is the gold standard test. ggnclinic: What is the importance of Head Tilt Table Testing in evaluation of syncope. Speaker-_Dr__Fredrick_Jaeger: If a patient has recurrent syncope and their cardiovascular structure is normal and their electrical structure is normal then the most likely cause of the syncope is most likely vasovagal syncope - which is the exaggerated form of the common faint. Speaker-_Dr__Fredrick_Jaeger: The tilt table is very helpful in confirming the diagnosis by testing susceptibility in the common faint - in addition - the tilt table is the standard test to look for the POTS form of dysautonomia - which may or may not have tendency toward fainting. kristeen11: How well do you think the epogen injection works for POTS Patients? Speaker-_Dr__Fredrick_Jaeger: There are no controlled studies using epogen in patients with dysautonomia. Speaker-_Dr__Fredrick_Jaeger: However - I have occasionally seen it utilized with variable effects. It is very expensive and has some potential risks associated with its use. Speaker-_Dr__Fredrick_Jaeger: It also requires careful monitoring. It is certainly not a first line medication. StacyRN: If a person has POTS for years, does the tachycardia shorten your lifespan? I am an RN trying to cope with 12 hour shifts and POTS. Am I making the POTS worse by pushing myself so hard? Speaker-_Dr__Fredrick_Jaeger: Since our understanding of the importance of dysautonomia such as POTS is relatively recent, there are no long term studies on survival. Speaker-_Dr__Fredrick_Jaeger: However - as I indicated in a previous question there is a high incidence of normalization of heart rate or resolution. My suspicion is that there are probably no reduction in survival assuming that the rest of the cardiovascular system and structure is normal. Speaker-_Dr__Fredrick_Jaeger: Frequently patients need to accommodate their work schedule around their symptoms. Jewel: Hello Dr Jaegar. Thank you for your time. I have a diagnosis of severe POTS with Neurocardiogenic Syncope and NMH. I have read on occasion that having NCS , NMH and other blood pressure issues on standing preculdes a diagnosis of classical POTS. Is this true ? Speaker-_Dr__Fredrick_Jaeger: No - I don't think they are mutually exclusive. Roseannecl: My daughter has very severe POTS and NMH.She also has severe CFS. All these issues started on the same day 8 years ago.She has tried many meds but has tolerated none. She is very worried about how deconditioning might affect her POTS and NMH yet finds due to her CFS that exercise can makes her problems much worse and the backlash she experiences after it is severe and can last months. Are there any tips on how to handle avoiding deconditioning while being very ill and unable to exercise? Speaker-_Dr__Fredrick_Jaeger: We frequently utilize the expertise of physiatrists and rehab specialists to improve the cardiovascular adaptations in patients with POTS and chronic fatigue. An exercise prescription is tailored to the individual. Consult a supervised cardiac rehabilitation program. AJS: I was wondering if it's common for a person with an autonomic disorder to have a positive ANA blood test. I tested positive for the SS-A antibody but was assured I do not have Lupus. Can this be connected at all? (I also had a positive tilt table test) Your guidance would be appreciated. Thanks! Speaker-_Dr__Fredrick_Jaeger: Connective tissue diseases have been associated with dysautonomia, such as POTS. The relationship of positive ANA titers to possible POTS is unknown. It would make sense that they could be related given that one of the theories of POTS is that it is an autoimmune disease - but certainly much more research is needed to confirm the association. alange3: I was diagnosed with POTs a few years ago when my symptoms were at their worse and my blood pressure was dropping drastically while my heart rate increased rapidly. (The episodes had my resting heart rate of 65ish increase to 160 and blood pressure dropping from 110/80ish to 70/50ish bottoming out around 55/40.) I have never lost consciousness as a result from an episode but would frequently go through fainting symptoms slowly, almost always resulting in vision loss. The symptoms have dulled dramatically in the past few years, but recently my heart rate is rising during episodes but my blood pressure is only having mild changes. Do you have any suggestions of medications or treatments to keep my heart rate from increasing so dramatically? Speaker-_Dr__Fredrick_Jaeger: In cases such as yours - we perform extensive autonomic testing to look at the underlying mechanisms - blood pressure and heart rate instability - including actually measuring your blood volume, the degree of blood volume distribution and pooling, the interaction of the autonomic nervous system and the brain and heart as well as the various components of the adrenaline and vagal side of the autonomic nervous system. Speaker-_Dr__Fredrick_Jaeger: We can then tailor a pharmacologic regimen based upon those results. paula_lacagnina: My questions are as follows: 1. Does POTS usually cause neurological symptoms like head pressure? 2. I know that most people grow out of POTS, but since her cancer was so rare do you think it's more unlikely for her to grow out of it?3. Is it okay to push her to do more? She should be in college (locally), but does not feel consistently well enough to go. What are your thoughts on this?4. Have you seen other cases like ours, and is there anywhere you can direct me to help her return to a normal life?5. My daughter has this weird feeling in her heart where it feels very heavy, like it's being squeezed. It only lasts for a few seconds and then it goes away. Is this due to POTS or is it something we should get checked? Speaker-_Dr__Fredrick_Jaeger: Your daughter's case is certainly unusual and from your description would be consistent with one of the secondary types of POTS syndromes not the usual garden variety. Speaker-_Dr__Fredrick_Jaeger: The treatment with plasmaphoresis has helped many patients with these types of dysautonomias as well as IV IG injections and some patients with immunologically mediated POTS. Speaker-_Dr__Fredrick_Jaeger: There are several excellent centers in the NY area including Columbia and others that deal with autonomic dysfunction. Speaker-_Dr__Fredrick_Jaeger: Regarding with getting on with her life - this is a complex decision best made by her and her treating physicians. anniekins: I have read that using opiates and some other medications can cause or make dysautonomia symptoms worse. If this is true would it be likely to make symptoms better if these drugs were stopped? Speaker-_Dr__Fredrick_Jaeger: Narcotics, pain medicine, sleeping medications all may worsen the autonomic system including causing low blood pressure and affecting bowel and bladder activity and are best avoided. Cleveland_Clinic_Host: We have approximately 15 minutes left in the chat. We received a large amount of questions and we will continue to answer as many as possible. We apologize if we did not get to your question. If you have additional questions after the chat, please use our contact link clevelandclinic.org/webcontact to submit your questions. fabracey: How did my daughter all of a sudden got POTS 2 years ago?-- she is 17 now. Is it genetic Speaker-_Dr__Fredrick_Jaeger: It is known to run in some families occasionally. There is a rare enzyme deficiency that can run in families that gives a POTS type syndrome. fabracey: My 17 year old daughter has been stuggling with every symptom of POTS for almost 2 years. one of the worst problems besides fainting is her constipation, what can be dont for this? Speaker-_Dr__Fredrick_Jaeger: Please refer to your family doctor or a GI specialist for this symptom. alange3: Are there any risks or problems a woman with POTs should be aware of during pregnancy? Speaker-_Dr__Fredrick_Jaeger: Sure - frequently POTS symptoms transiently improve during pregnancy due to hormonal affects in blood volume expansion. However, the opposite can also occur and may certainly lead to worsening symptoms during pregnancy and delivery. Speaker-_Dr__Fredrick_Jaeger: The medication choices are very limited during the first trimester but there are some medications we can use safely during the second and third trimester. Speaker-_Dr__Fredrick_Jaeger: I frequently work closely with obstetricians who have experience with POTS patients and can get them successfully through delivery. Msaw: Should people with POTS & Ehlers-Danlos Syndrome (joint hypermobility syndrome) be checked for Chiari malformation? Speaker-_Dr__Fredrick_Jaeger: We will screen people for our genetics center for Ehlers Danlos in particular what type as there are many people who are misdiagnosed. We also screen for chiari malformation through our neurosurgical colleagues through MRI. kristeen11: What do you think the best line of treatment is for pots patients that seem to be intolerant to medications such as miodrine, beta blockers, calcium channel blockers, ssri's etc.???? Speaker-_Dr__Fredrick_Jaeger: I will refer to the previous question - where we do extensive testing and evaluation to determine the best treatment. primitivesplayer: hello, I am a 61 year old female with multiple health problems , cabag done i 07, kidney stents in 07, and left carotid artery cleaned out 6 months ago , my meds are as follows atenelol 50 mg 2xdaily avaprp 150 1 daily lopid 600 mg 2 daily zocor 80 mg 1 daily plavix 1 daily 81 mg baby asprin daily nexium 2 daily lexapro 10mg 1 daily 4 fish oil daily 1000mg estrogen patch 0.025 one weekly xanax .25 mg 2 daily. My problem is that I have alot of erractic blood pressure reading when it gets to like 95 over 33 i am very sick passed out once about 2 weeks ago going up stairs is wicked after a large meal same . I walk 7 days a week and no systoms odd I think . Somtimes it feels just horrible takes about 5 or so minutes to go away . any imput would be very helpful. Thank you so much for this forum sorry I am not much of a typer. God bless Speaker-_Dr__Fredrick_Jaeger: Post parandial hypotension - or hypotension that occurs after eating is very common in dysautonomia and with the conditions that you mentioned. Obviously small frequent meals to prevent pooling of blood in the intestines can help - frequently support stockings can also be helpful. We actually do testing that I mentioned previously that look at changes in blood pressure with changes in posture - there for testing would be helpful for you. Broken_Shell: What type of montoring and tests should someone with dysautonomia have on a regular basis (specific to their having dysautonomia)? Speaker-_Dr__Fredrick_Jaeger: There are no specific regular tests other than postural blood pressure and heart rate checks that we do at every visit. Speaker-_Dr__Fredrick_Jaeger: If we have patients on medications we may monitor blood work, renal fucntion, electrolytes periodically. If patients symptoms are not responding we will routinely restage them with further autonomic testing such as tilt test and blood volume test to assess the effect of medication changes Cleveland_Clinic_Host: Dr Jaeger, earlier in the chat you mentioned Cleveland Clinic's Center for Syncope and Autonomic Disorders. Can you please provide more information on the center and how to make appointments if need be Speaker-_Dr__Fredrick_Jaeger: The Center for Syncope and Autonomic Disorders has evolved over the last two years to incorporate diverse specialists and subspecialists devoted to the treatment of autnomic disorders. Speaker-_Dr__Fredrick_Jaeger: We currently have two cardiologists who focus on the blood pressure and heart rhythm aspects of dysautonomia and have four autonomic neurologists, three adult and one pediatric - that work with us closely. We offer extensive testing of the autonomic nervous system which is currently centralized in the Heart and Vascular Institute of the Cleveland Clinic. Speaker-_Dr__Fredrick_Jaeger: The tilt table test was developed and introduced by the Clinic in the early 80s but our center has certainly grown to offer all the above diagnostic and therapeutic modalities. Speaker-_Dr__Fredrick_Jaeger: We have the resources of the entire Cleveland Clinic including gastroenterologists, headache and epilepsy neurologists to assist us with our patients. Elizabeth: Dr. Jaeger, My 20 year daughter was diagnosed recently with POTS. She is having convulsions and epilepsy was ruled out by videography. Many tests confirmed POTS. Since starting salt and water, convulsive episodes have decreased to 1-2 week. However when she has them, she loses consciousness, has posturing, closing of throat and very impaired breathing, with jaw clenching. These last 30-60 minutes. Is this common to Pots and is she at risk for stroke or death? What should we do? Is something else going on? Speaker-_Dr__Fredrick_Jaeger: It sounds that her form of dysautonomia also has concomitant syncope which can reflect vasovagal being the most common. We always do an assessment of the heart in our syncopal patients and in our POTs patients. In the absence of heart disease or arrhythmias, stroke and heart attack - death from fainting spells is very rare. If this has not been done - she should have a comprehensive cardiovascular exam to address your concerns. Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Jaeger is now over. We received a high volume of questions. If your question was not answered please submit your question at www.clevelandclinic.org/webcontact. Cleveland_Clinic_Host: Thank you again Dr. Jaeger for taking the time to answer our questions about Autonomic Disorders today. Speaker-_Dr__Fredrick_Jaeger: Thank you for having me - our website has more information for you - here are additional resources: Speaker-_Dr__Fredrick_Jaeger: American Autonomic Society - http://www.americanautonomicsociety.org/ Speaker-_Dr__Fredrick_Jaeger: Dysautonomia Foundation, Inc.- www.familialdysautonomia.org Speaker-_Dr__Fredrick_Jaeger: Dysautonommia Information Network - http://www.potsplace.org/ Speaker-_Dr__Fredrick_Jaeger: Dysautonomia Youth Network of - www.dynakids.org Speaker-_Dr__Fredrick_Jaeger: Familial Dysautonomia Hope Foundation - www.fdhope.org Speaker-_Dr__Fredrick_Jaeger: National Dysautonomia Research - http://www.ndrf.org/ Speaker-_Dr__Fredrick_Jaeger: National Institute of Neurological Disorders and Stroke - NIH Neurological Institute - http://www.ninds.nih.org/ Speaker-_Dr__Fredrick_Jaeger: National Organization for Rare Disorders (NORD) - www.rarediseases.org Speaker-_Dr__Fredrick_Jaeger: Syncope Trust and Reflex Anoxic Seizures (STARS) - www.stars.org.uk Cleveland_Clinic_Host: To make an appointment at Cleveland Clinic's Center for Syncope and Autonomic Disoders please call 1-800-223-2273 ext.46697. Thank you.
  10. Thanks everyone. There are some very good ideas there.I use a seat in my shower but for some reason I still find it extremely arduous washing my hair. It probably doesn't help that we have dreadful water pressure here which means rinsing hair takes four times longer than it might in some showers. Smiles I had never thought of drying my hair like that but I must give it a go! My blow drying is another thing that's suffered sinces POTS arrived on the scene as having my arms up over my head just makes things much worse. I let it dry au natural these days which takes forever. Broken shell I will definitely try drinking water in the shower too in case that might help a bit. I also make sure to have all my necessary bits and pieces beside me during the day in case I'm not able to stir and need something at some point. It's amazing how much more organised I've become and how I've learned to anticipate all sorts of possibilities and be ready for them ... If only I could apply it to real full energy fueled life I'd be super duper efficient! Potsgirl I think you've hit the key to management on the head there with the laundry tip. POTS seems to be one illness where pacing is key and knowing your limits is important. It's always much better to break tasks down into managable chunks that you know you can do and get help with the stuff you find is too much. Mrs. Burschman I find that the bath very tough to recover from too. I don't know why.Reading through this I'm starting to wonder if the universe is conspiring to make me dirty given that I find all conventional cleaning is so hard!I persist with anyway just in case anyone is worried! Erik I'm glad you liked the tip. I always wanted to be an astronaut when I was small.Little did I ever think the closest I'd come to it would be sharing a strange approach to personal hygiene with astronaut-kind! Actually given the zero gravity conditions in space we'd all probably do better up there. Perhaps my next tip should be that we arrange an excursion to the moon!
  11. Since I have got POTS and NCS I find the shower can be awful, particularly if I'm trying to wash my hair. I think it's the combination of being upright, the heat and then having to put my hands up over my head for a time to do my hair. There are times that I'm just not able to do it at all and when I am, it invariably exhausts me to the point that I spend hours recovering from it. Sometimes during bad phases I get so sick in the shower that I have to come out and lie down before I've finished my hair at all. Recently though someone pointed me in the diretion of something that has made a big difference to me.Its called No Rinse Shampoo. It was developed by Nasa for astronauts to wash their hair easily in space and is used by disabled people and campers who don't have easy access to a shower. You just pour it on your head until hair is wet, rub it into a lather, towel dry the excess liquid away and style,blow dry or whatever, as normal.There's no water involved so it can all be done fully clothed and sitting on your bed in a matter of minutes! I have long thick hair so I didn't expect it would work for me but I was astounded to find my hair looked as good as if I'd washed it in the shower and my head felt just as fresh after using it. I've found that cutting down the amount of times I've had to wash my hair while in the shower has really saved some of my strength for doing other things and means I don't have to spend AS long recovering from the shower. I thought I'd share it as it might help someone else in the same situation. It doesn't contain alcohol or strong smelling chemicals for anyone concerned about that btw.It's just like water and is not harsh on your hair either.It's also inexpensive. It's available in lots of places for eg.:http://www.drugstore.com/qxp79887_333181_sespider/no_rinse/shampoo.htm Pic of astronaut using it : http://spaceflight.nasa.gov/gallery/images...10-343-027.html .If it's good enough for them...! It got me wondering too ,what other tips have you found that have made a difference to your daily life or saved strength/energy in the small unavoidable tasks that life throws up ? I'd love to hear and find out what else I could do differently that might help a little.
  12. My life is bed and the couch too. I've only managed to get as far as the couch in recent months so it's still a bit of a novelty and even at this level of disability just being downstairs for a few hours every day feels more like real life so I love it. On exceptionally good days (there have only been around 4 or 5 of them them this year) I have managed to go out to a cafe with my mum. There are only 2 near my home that she can park right outside the door from so they are the ones we go to. It's absolute heaven when that happens and I honestly feel like kissing the ground there on those days! That said on 3 of my 5 journeys out I have felt horrible through and it's taken all my strength to stay upright, not vommit and not keel over so they weren't exactly fun. Two times were completely comfortable and it was just incredible to sit there for 20 mins and take it somewhat for granted and enjoy chatting and looking around without feeling like my whole body was in full scale emergency mode with my heart thumping ,the whole world zooming in and out of focus in my field of vision and the horrible weakness. My longest trip out to date has been 30 mins from leaving the house to arriving back at it and it's usually taken a week to recover from unfortunately. I'm better than I was but I'd kill to be able do those tiny things even once every week at this stage.
  13. Thanks for that Maggie. I have all kinds of weird reactions too to things I expect will help so I'm kind of nervous of trying new things at this stage. I rang the head office of the company today and they said that they had never heard of POTS but they had a 30 day money back offer if you were not satisfied with the product for any reason. I think I might try it on that basis and then if it all goes pearshaped at least I won't end up out of pocket. That machine you mention looks interesting Ramakentesh. It's good to see some non invasive, non drug treatments enter the cardiovascular arena.It would be particularly great if something like that could help POTS patients given our sensitivity to meds. It seems to indicate that there are little or no side effects associated with use for most patients as long as they are not in a contre indicated group which most POTS sufferers would not be. Maybe someday someone might trial it or something like it with POTS. Until then I'll run my own Circulation Booster experiement and report back if it makes any miraculous improvement!
  14. I find that my resting heart rate can vary alot depending on how ill I'm feeling and what phase I'm in. During a good phase while lying down it'll be between 60 and 80.During a bad day it'll probably be between 90 and 108. Sometimes it has spiked up to 130 and higher for a few hours just lying completely flat and quiet - I tend to feel scarily ill at those times. Also all my holter monitors have detected HR runs of 153 at times durng my sleep. I've equally had really bad timess where my lying down HR was 50! It just seems to go all over the place. I think that might be why I've reacted so badly to beta blockers and any medications I've tried. I definitely find sitting can cause my HR to jump quite a bit too. It'll often be maybe 100-130 while sitting...again this will depend on how ill I'm feeling over all during the day.The worse the day, the higher it will be. I find breathing out can help it be less uncomfortable too . I often find three consecutive out blows can help a little bit. Eating affects it too but again does so most when I feel most ill. During bad times my BP can be very low and my HR can be 150 after food and it makes me feel hellishly bad. I don't be even able to lift my head up or walk to the bathroom for around 2hours after I've eaten. When I'm going through a "good time" I can take eating for granted and it's complete absolute heaven! I also find that during bad times that just turning over in bed ,and particularly lying on my right side with my legs out straight, sends my HR through the roof. It wakes me up in the night if I roll over. During my "good times" that doesn't happen at all. Do other people find their sensitity to movement and eating etc can alter dramatically depending on what phase they are in? Very good luck with getting your dosage right FutureHope.
  15. Has anyone tried The Circulation Booster machine? It's a home use machine that uses small electrical impulses to stimulate muscle contraction in the feet and lower legs to improve circulation. You just sit passively with your feet on it for 30 minute a day and supposedly it does the rest. It claims to help all sorts of circulatory illness from Lymphodema to Peripheral Neuropathy. It doesn't mention POTS anywhere on the website as a condition it can help but it does mention irregular blood pressure and pulse rate as symptoms of other illnesses that it can help. It also says it can help those who are immobile due to illness prevent muscle wastage. I have severe CFS , Neurocardiogenic Syncope and severe POTS. I go through long periods when I am too sick to get out of bed at all...I spent 4 months around this Christmas unable to even sit up in bed. I'm a bit better now and can get up a bit around the house for a couple of hours most days as long as I don't overdo myself. I was thinking this machine might be helpful for me to see if it would help the POTS and the low bp that are pretty constant features with me. Also exercise just kills me! It lands me right back in bed with severe relapses...sometimes for months at a time. I thought this machine might help me let my calf muscles get some exercise without utterly exhausting me in the process. I was just wondering if anyone here had given it a go or could think of any reason why it might not be a good idea before I go forking out for it? Thanks
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