katsusu

I am thinking about something very basic but official looking like the - breast canceer pamplets, or high blood pressure ones. Something that we can have on hand that has some basic information plus web sites to look for furture information. I guess, what i am looking for -is something to make us look like we are an official illness because the way people react to me when I try to explain it or give them print outs - sometimes it seems like they think i am making it up. Besides - it would be a way we could start making people aware-that we are here and unforunately not going away. Most of the information couldbe found in this web site- especially the symptoms. anyway- just an idea. kathleen

you sound remarkably organize. your right- we may just need to folllow your example. but i was also thinking about something a little more brief to hand out to doctors and nurses- where you could maybe check off the symptoms that effect you. but other wise i am going to try to follow your example. kathleen

After writing my last 2 entries and reading about the pre-surgery entry- is there a way we could put together an easy to understand basic booklet or page-that we can give to the medical staff when we go to the doctors. I have already copied and carry with the symptoms and what is POTS pages from this site -but i think we could put together one faster for them to read. At the same time maybe make adaily chart that we could track our symptoms every day, anybody creative enough? Kathleen

When I started writing this-i went another direction before i got to my point- so ou might want to go to part 2. This posting has somewhat to do with my last posting but in my last one was just about the experience, and at a time that i felt like situation took over me instead of me controlling the situation. This posting has to do about our strength that each of us have inside, and how we need to trust and have hope in ourselves. Lets face it -when we go to the doctors for POTS or a cold - we are put in the same catagory has everyone else and we are not. Besides that our body reacts differently - we also react to medications differently. Trying to make a doctor to understand why orthostatic vitals will tell him how bad you feel and that POTS has a way of telling you that something is going on in your body- only to have him miss the point and tell you that "we already know you are tachycardia " is very frustrated. IF we know we have POTS that alone makes us knowlegable then most doctors and nurses about the condition. It took the medical staff 3 years to figure out that i had POTS. IT was when i was getting brain surgery for Parkingson Disease they happen to figure it out. I remember when i was in the hospital and not knowing about POTS- and how hard of time i had recovering. I had problems explaining to doctors that i always felt sick- so many things were said to me - not that they were trying to be mean but somewhat sarcastic. I also saw how others were treated sometimes- especially the older patients. They do not understand that a little remark or even a small look that might not mean anything to them - might be very painful especially when you have a illness as POTS on top of other medical problems. When I was recovering I almost fainted - they took my orthostatic vitals and thought I was dehydrated. So- they pump, and pump, and kept pumping me with fliud but my HR never would go down. For a week they took my vitals 3 x per day- till they figured it out. Finally, I felt like screaming - I TOLD YOU SOMETHING WAS WRONG. I think that getting the respect that POTS is an actually -very difficult illness to have- is all we ask for -when we know there is not much help for us besides knowledge. Trying to get respect that you know your body and trying to explain why you are so interested in your pulse and why taking orthostatic vitals is the only way - they can see if you are alright or not. I think all of us have had our vitals taken sitting down and been told that our vitals are perfect. They don't understand that our vitals tell us alot about what is going on- that alittle change means more to us then the average person. I sometimes think it more frustrating having knowledge and trying to explain then explaining over and over about POTS. (and still people do not realize the inpact POTS on your life). Please don't get me wrong - I am not bitter. I know there is alot of wonderful medical personel out there, but i also know that we have to stand for ourselves. Part 2. When I was in the hospital recovering from back surgery, getting frustrated because the nurses did not understand why i couldnot take all painkillers or why i was always asking for anti-nauseau medications. I also found out that my physchologist was going to Iraq for a year and that my doctor would not be available for unknown time - leaving his partner that i did not get along with. i felt very alone and almost hopeless. i was asking GOD what I was suppose to do and what was i suppose to learn from this. Well, I think i got my answer- even though i did not really like it at first- it made sense. I think there comes a time that we know as much as we are going to know at that time. That we have to stopo going from test to test, from doctor to doctor , to keep searching and putting all our hope -where we are often let down--and start putting our hope in oursevles. Our knowledge, our strength and our determination. Because no matter how weak you may feel, stop to think how strong you really are because you are here looking for answers, you keep coming back and fighting (even if you feel you are losing) - don't you see -you are losing hope in others because they can not give you the answers -a fast cure. Because there is no fast cure or answers that fit every body. It ends up -for each of us to learn what works with us- to get ourselves knowledgeable to make a doctor respect you - and to most of all- trust your self and your knowledge of your body and what is happening and what medications does to it. You see, i should of told my doctor that taking too many painkillers and sleeping aids- makes me emotional. and i should have realized that was happening to me that day -i let the nurse get to me. If i trusted myself -things would of ended up diffferently. I am not saying to not look for medical help. But there comes a time that you need to know you have done all you can FOR THE TIME BEING -now it is time to have HOPE in yourself- -someof you are not ready yet, but some of you know that the HOPE that God gives you in yourself has made you stronger then any hope you could have in anybody else. Basically -we have to stand up and make doctors and staff understand POTS, instead of waiting for them to teach us. hope it makes sesnse. sorry so long just a thought Kathleen

Thank-you for the support. I do have to say that all the nurses were not bad actually most were great but it always seem to be those few bad ones that just happen to be your nurse -when i am at my worse. kathleen

HI, Thank you for all the prayers and thoughts on the back surgery I just had. I want to take a quick side track here to make a remark for the person who posted information for surgery- What I did was made copies of the articles here about POTS (especially the symptoms of POTS) and I looked up and made copies of any information about POTS and surgery and gave them to my doctor and the anestiologist. I also brought a copy with me to show the nurses. But my surgery went well- my recover went well too because my doctor looked up information about POTS and the medications that I could best handle- it was a short list. HE made sure I did have an arteral line, they pumped me up with lots of fuild and had me kept me over night in the icu to watch me and my vitals. SO, my surgery went well. My recover was not as fast as the last surgery I had. I had more pain. For longer time. Since the doctor only let me tried a few because he said the others would not do well with the POTS. I was basically left with some tyoe of morphine shots when i was in bad pain. HE would not let me out till i could handle the pain with other pain killers - but i could do it for awhile then i would need a shot again. He did find a great anti-nauseau medication that took care of that everytime I felt nauseus from whatever. But the biggest problem was that i needed to take sleeping pills and pain killers -more then my body is used to because i know at home i can handle so much no matter the pain or my problem sleeping. The nurses had problem understanding the situation with POTS and why i kept taking my pulse. They started out nice but i felt as time went on that they thought i was crazy. Only a few took the time to understand and read about that POTS is not really about the pulse but more about what the pulse tells you about what is happening in your body -when your pulse is higher. and that it does not matter how high you go but it is what is normal for you- that is important. Since i was in the hospital i took the pain killers and the sleeping pills, but they me tired and emotional. To the point that after getting somewhat of an attitude from a nurse- i felt she was talking down to me- i know medication came into play but i have had that kind of attitude so much in the past from nurses and doctors -that i could not take it. i packed myself and left - very emotional. i came home and it took me all daytill i did not feel so drugged out. I did talk to the doctor- and his concern was that my pain was not managed yet. But he told me i could come back. my recommendation is not only propare yourself for the surgery but for the recover part to. What i need to ask is- do people with POTS have bigger problems with sleeping pills and pain killers (besides the basic). I did have a big problem with consitpation in the hospitals too. kathleen

thanks tearose, somehow what i said came out did not come out right. i know people are interest but iguess -i meant - that i was afraid hat i pusomething up that was a bit -long worded and boring --in hat sense of the not interesting. Kathleen thanks for the support

If you think that we have POTS because the chemicals in our body are basically messed up making us sensative to heat, standing, and other things. It would make sense that our body would seem to over react to any chemicals that enter our body- in what ever form- Anytime i start a new medication, i research it - look ate side effects - and discuse it with my doctor. Then I wiegh the benifits with the side effects - then usally try it at the lowest dose and increase it slowly. Since I have Parkinson Disease- I have no choice but to take medication that causes me to become more orthostatic hypotension - consitpation - naueusness - - and a bunch of other great effects. I need the medications - all 5 of them. Taking 11 pills every day for it. At first i could not tolerate them but slowly i was able to reach the level i needed to get relief from the PD. The most important thing is to know your body - learn what effects you- don't take the doctors word for it -(look it up yourself) especiall if its a new doctor or a doctor that works on another system -make them work with you, start a very close relationship with your pharmacist so he undeerstnads your conditions -they can be as important as your doctor sometimes giving you recommendations of different medications in the same family of drug that might effect you less-- know what side effects are -so you can prepare yourself (just in case)- knowing that you might need to tolerate it till your body can get use to it. Basically knowledge isthe best medicine in this case. Hope this helps you understand alittle better. Kathleen

HI, There are many times that my BP goes up and my HR numbers go down. If this happens at the doctors office, I always try to question it- asking why my bp is now in the 140 instead of the 100s- and that it is strange that my hr is in the 69s- they always answer me that 1)- that bp rate is not that bad (missing the point that this is not normal for me)and 20 (which is what i find interesting because my bottom no. is always the high one around 100 (if it happens)) -they sasy that they do not worry about that as much as long has it is not always there. Because that is thet body responding to something happening in the body like pain or stress . That they start being concern if both bp and hr go high at the same time, but it is how the body works -when one is up the other one should be lower. My hr no matter how low it is standing always goes down 30 points when lying. I am not sure if this is correct but this is what i was told several times. Kathleen

Thank-you for the reply, I was afraid no-one cared, but this is one of those subject that might not mean anything to you till it starts happening to you. Kathleen

I went back and was researching Parkinson's disease and POTS in the forum. All of the articles that made people wander about having both was due to having the shakes - since i do have both PD and POTS-the shakes (tremors) that people were talking about were (i feel) not the PD kind. There is many other factors involved with PD -too. SO, i decided to get some good basic information -that way i could help you understand PD better, and hopefully give you some peace of mind. another note -is PD is 85% of the time dx in people 0 and over. to have it between the age of 30 to 50 is called young onset (like me) is not common. To have it younger then that you are talking very rare- which is almost opposite of POTS. Hope it helps Kathleen About Parkinson Disease What is Parkinson disease? Parkinson disease is a brain disorder. It occurs when certain nerve cells (neurons) in a part of the brain called the substantia nigra die or become impaired. Normally, these cells produce a vital chemical known as dopamine. Dopamine allows smooth, coordinated function of the body's muscles and movement. When approximately 80% of the dopamine-producing cells are damaged, the symptoms of Parkinson disease appear. What are the signs and symptoms of Parkinson disease? The loss of dopamine production in the brain causes the primary symptoms of Parkinson disease. The key signs of Parkinson disease are: Tremor (shaking) Slowness of movement Rigidity (stiffness) Difficulty with balance Other signs of Parkinson disease may include: Small, cramped handwriting Stiff facial expression Shuffling walk Muffled speech Depression Who gets Parkinson disease? Parkinson disease affects both men and women in almost equal numbers. It shows no social, ethnic, economic or geographic boundaries. In the United States, it is estimated that 60,000 new cases are diagnosed each year, joining the 1.5 million Americans who currently have Parkinson disease. While the condition usually develops after the age of 65, 15% of those diagnosed are under 50. How is Parkinson disease diagnosed? The process of making a Parkinson disease diagnosis can be difficult. There is no X-ray or blood test that can confirm Parkinson disease. A physician arrives at the diagnosis only after a thorough examination. Blood tests and brain scans known as magnetic resonance imaging (MRI) may be performed to rule out other conditions that have similar symptoms. People suspected of having Parkinson disease should consider seeking the care of a neurologist who specializes in Parkinson disease. The below information is the best i have ever seen on tremmors. It hopefully will help everyone that have tremors understand them better- at least it might be able to tell you what you kind of tremors you don't have. http://www.clevelandclinicmeded.com/diseas...tm#signsymptoms Tremor is the most common movement disorder. Galen first described tremor as an involuntary up-and-down motion in the 2nd century. In 1817, James Parkinson characterized Parkinson's tremor in his essay on "the shaking palsy."1,2 Tremor is defined as a rhythmic, involuntary, oscillating movement of a body part occurring in isolation or as part of a clinical syndrome. In clinical practice, characterization of tremor is important for etiologic consideration and treatment. Common types of tremor include: Rest or Resting Tremor Resting tremor occurs when a body part is at complete rest against gravity. Tremor amplitude decreases with voluntary activity. Examples of resting tremor are provided in Table 1. Postural Tremor Postural tremor occurs during maintainence of a position against gravity and increases with action. Action or Kinetic Tremor This form of tremor occurs during voluntary movement. Table 2 lists examples of postural and action tremors. Task-specific Tremor This tremor emerges during specific activity. An example of this type is primary writing tremor. Intention or Terminal Tremor Intention tremor manifests as a marked increase in tremor amplitude during a terminal portion of targeted movement. Examples of intention tremor include cerebellar tremor and multiple sclerosis tremor. PREVALENCE Prevalence rates vary, depending on the tremor type. Essential tremor is the most common form, with a prevalence rate ranging from 0.4 % to 5.6%.3 Family history is positively identified in more than 60% of patients, and the pattern of inheritance is autosomal dominant. Age of onset of ET has two peaks, early in life and in older age group. Parkinson's disease tremor generally occurs during rest, but some patients have postural and action tremor components, also known as re-emergent tremor.4 Population surveys for Parkinson's disease in different geographic regions of the world have shown a wide range of prevalence rates. For whites within Europe and North America age adjusted prevalence ratio range from 56 to 234/100,000 compared to a range of 14 to 148/100,000 in Asia. PATHOPHYSIOLOGY Four basic mechanisms are linked to the production of tremor.5-7 It is likely that combinations of these mechanisms produce tremor in different diseases. Mechanical oscillations of the limb can occur at a particular joint. This mechanism applies in cases of physiologic tremor. Reflex oscillation is elicited by afferent muscle spindle pathways and is responsible for production of stronger tremors by synchronization. This mechanism is a possible cause of tremor in hyperthyroidism or other toxic states. Central oscillators are groups of cells in the central nervous system present in the thalamus, basal ganglia, and inferior olive. These cells have the capacity to fire repetitively and produce tremor. Parkinsonian tremor may possibly originate in basal ganglia, and essential tremor within the inferior olive and thalamus. Abnormal functioning of the cerebellum may produce tremor. Positron emission tomography studies have shown cerebellar activation in almost all forms of tremor.8 SIGNS AND SYMPTOMS Tremor can be classified on a clinical and etiologic basis. Signs and symptoms depend on tremor type and etiology. The most commonly seen clinical tremors and their associated signs and symptoms are: Physiological Tremor This is a very-low-amplitude fine tremor (between 6 Hz and 12 Hz) that is barely visible to the naked eye. It is present in every normal individual during maintaining a posture or movement. Neurologic examination results of patients with physiologic tremor are usually normal. Enhanced Physiologic Tremor This is a high-frequency, low-amplitude, visible tremor that occurs primarily when a specific posture is maintained. Drugs and toxins induce this form of tremor. The suspected mechanism is mechanical activation at the muscular level. Signs and symptoms of drug toxicity or other side effects may or may not be present. Tremor symptoms may improve after discontinuation of the causative agent. Essential Tremor Essential tremor is the most common form of all movement disorders. Classical essential tremor is predominantly a postural- or action-type tremor and usually patient has positive family history of tremor. Drinking alcohol often reduces the tremor. Other associated symptoms may include mild gait difficulty. Parkinson's Tremor This is a low-frequency rest tremor typically defined as a pill-rolling tremor. In some patients, postural and action tremor may also occur. Parkinson's tremor usually occurs in association with other symptoms, such as micrographia, slowness (bradykinesia), and rigidity. Usually, there is no family history of Parkinson's tremor, and alcohol consumption does not decrease movement (Table 3). Table 3: Characteristics of Parkinson's Tremor vs Essential Tremor Characteristic Parkinson's Tremor Essential Tremor Tremor type Resting tremor Postural and action tremors Age Older age (> 60 years) All age groups Family history Usually negative Positive in more than 60% of patients Alcohol Not beneficial Beneficial Tremor onset Unilateral Bilateral Muscle tone Cogwheel rigidity Normal Facial expression Decreased Normal Gait Decreased arm swing Normal Cerebellar Tremor Cerebellar tremor is a low-frequency (less than 4 Hz) intention tremor that usually occurs unilaterally. Common causes are multiple sclerosis, stroke, and cerebellar injury. Signs and symptoms of cerebellar dysfunction may be present, including ataxia, dysmetria, dysdiadokinesia and dysarthria. Holmes' Tremor The term Holmes' tremor or rubral tremor designates a combination of rest, postural, and action tremors due to midbrain lesions in the vicinity of the red nucleus.5 This type of tremor is irregular and slow frequency (4.5 Hz). Signs of ataxia and weakness may be present. Common causes include cerebrovascular accident and multiple sclerosis, with a possible delay of 2 weeks to 2 years in tremor onset and occurrence of lesions. Drug-induced Tremor Types of tremors induced by drugs include enhanced physiologic tremor, rest tremor, and action tremor. Signs and symptoms of drug-induced tremors depend on the drug used and on a patient's predisposition to its side effects. Some drugs cause extrapyramidal side effects manifesting as bradykinesia, rigidity, and tremor. Table 4 is a list of drugs that may induce tremor, along with the types of tremors and neurologic signs they produce. Tremor Due to Systemic Disease Tremor due to systemic disease usually occurs when the patient is moving or assumes a specific position. Associated symptoms include asterixis, mental status changes, and other signs of systemic illness. Diseases such as thyrotoxicosis and hepatic failure as well as delirium tremens and drug withdrawal are among the common causes. Psychogenic Tremor Psychogenic tremor may involve any part of the body, but it most commonly affects the extremities. Usually, tremor onset is sudden and begins with an unusual combination of postural, action, and resting tremors. Psychogenic tremor decreases with distraction and is associated with multiple other psychosomatic complaints.9 Orthostatic Tremor Orthostatic tremor is considered to be a variant of essential tremor. This type of tremor occurs in the legs immediately on standing and is relieved by sitting down. Orthostatic tremor is usually high frequency (14 Hz to 18 Hz), and no other clinical signs and symptoms are present. DIAGNOSIS Diagnostic evaluation of the tremor patient should include a thorough clinical history, clinical examination (including tremor rating), and differential diagnosis. The tremor research investigation group (TRIG) proposed a working definition of essential tremor for research studies:10 Definite essential tremor: Postural tremor in the arms which increases during action in the absence of any condition or drug known to cause enhanced physiological tremor and in the absence of cerebellar symptoms and signs, and in the absence of PD and dystonia. Head tremor may or may not be present. Probable essential tremor: Postural tremor in the arms without increase during action in the absence of any condition or drug known to cause enhanced physiological tremor and in the absence of cerebellar symptoms and signs, and in the absence of PD and dystonia. Vocal and head or neck tremor in the absence of any condition or drug known to cause enhanced physiological tremor and in the absence of cerebellar symptoms and signs, and in the absence of PD and dystonia. Possible essential tremor: Postural tremor in the arms and action tremor in arms in the absence of any condition or drug known to cause enhanced physiological tremor and in the absence of cerebellar symptoms and signs, but in the presence of PD and dystonia. Clinical History The clinical history must detail tremor onset, duration, severity, affected area, activating factors, relieving factors, effect of alcohol, family history, and associated symptoms. Clinical Examination The clinical examination should determine a tremor rating and tremor frequency. The patient also should be examined during rest, when assuming various positions, and when moving. An examination of gait, muscle tone, facial expressions, and dexterity is also important, particularly in differentiating essential tremor from Parkinson's disease. Tremor in each affected body part can be rated as resting, kinetic, or postural with a scale developed by Kahn et al as follows:11 0 - No tremor 1 - Slight tremor 2 - Moderate tremor (less than 2 cm excursion) 3 - Marked tremor (2 cm to 4 cm excursion) 4 - Severe tremor (more than 4 cm excursion) Laboratory Work-up A laboratory work-up is not necessary for most tremor patients. A thyroid function test is helpful to rule out hyperthyroidism in patients with signs of thyroid disease and tremor, particularly postural and action types. In young patients (younger than 40 years of age) with signs of parkinsonism and tremor, a serum copper, serum ceruloplasmin, 24-h urinary copper, and slit-lamp examination is necessary to rule out Wilson's disease. To rule out systemic causes of tremor, such as hypoglycemia, liver disease, electrolyte imbalance, or drug abuse, appropriate tests should be ordered. A magnetic resonance imaging or computed tomography scan of the brain is needed in some patients if tremor onset is acute, progression is rapid, and cerebellar signs suggest stroke, demyelinating disease, or structural lesion. Tremor also can be analyzed and diagnosed with the help of accelerometers and surface electromyogram (EMG) recordings. Differential Diagnosis Differential diagnosis of tremor includes myoclonus, clonus, asterixis, and epilepsia partialis continua. Myoclonus is irregular or rhythmic brief muscle jerks that can mimic tremor. Electrophysiologic analysis by EMG or electroencephalogram (EEG) as well as back-averaging help to make the diagnosis. Clonus is a rhythmical movement around joints that is stimulated through stretch reflex. Passive stretching increases the clonus but not of tremor, helping to differentiate clonus from tremor. Asterixis is a type of myoclonus that can cause a flapping tremor of the extremities. Asterixis can be differentiated from tremor on the basis of irregular movements. In addition, EMG readings show pauses longer than 200 msec. Epilepsia partialis continua can cause rhythmic jerks in the extremities. A clinical history that is positive for epilepsy and EEG readings that show abnormal spikes help point to the correct diagnosis. THERAPY AND OUTCOMES Essential and Parkinson's Tremors Essential tremor is a slowly progressive disorder for which no preventive therapy is available. In some cases, no treatment is required, particularly when disability is minimal or the risk of taking medication is higher than its benefit. Treatment options for essential tremor includes pharmacologic approaches and surgical management. Additionally, physical and psychological measures, such as biofeedback and relaxation techniques, may be helpful in managing mild tremor. Parkinson's disease is a neurodegenerative disorder that manifests clinically with variable degree of rest tremor of one or more limbs in association with rigidity and bradykinesia. No preventive or neuroprotective therapy is available. Mild rest tremor without disabling motor symptoms does not require treatment. A wide range of treatment options for Parkinson's disease tremor is available and includes oral medications, botulinum toxin injections and deep brain stimulation surgery. Pharmacologic Management Treatment of essential tremor usually begins with primidone or propranolol monotherapy. The dosages are gradually increased to achieve optimal response. If tremor control remains inadequate with increased monotherapy dosages, combination therapy may be instituted. For appropriate candidates in whom pharmacologic therapy is inadequate, localized injections of botulinum toxin may be considered.The beta-adrenergic receptor antagonist propranolol (Inderal) is used in the treatment of essential tremor. Approximately 60% to 70% of patients may notice reduction in tremor amplitude with therapy. Propranolol is most effective for upper limb tremor and less effective for head and voice tremors. Contraindications to its use include heart failure, cardiac conduction disorders, asthma, and diabetes. Side effects include decreased exercise tolerance, fatigue, bradycardia, and peripheral vasoconstriction. Propranolol should not be stopped abruptly due to possible rebound hypertension. Propranolol should be started at 40 mg twice daily for the treatment of essential tremor. The dosage may gradually be increased to 120 mg/day to 320 mg/day in once daily or divided doses. Doses higher than 320 mg/day have not proved to be efficacious. Other beta-blockers used in the treatment of essential tremor include atenolol, metoprolol, timolol, and nadolol; however, these are not as efficacious as propranolol. Primidone (Mysoline) is a structural analog of phenobarbital. The drug reduces tremor amplitude by up to 60% to 70%. Although primidone therapy reduces hand tremor, tremors of the head, voice, and other areas improve less.The starting dose of primidone should be low (12.5 mg to 25 mg), taken at bedtime, and gradually increased until tremor reduction is achieved. The maximum dosage is 750 mg/day in three divided doses. Primidone is slightly more effective than beta-blocker therapy. Side effects may include nausea, vomiting, sedation, vertigo, ataxia, and headache. These side effects can be prevented if therapy is started at low doses. If monotherapy with primidone and propranolol is not beneficial, the two agents can be used in combination. Primidone can gradually be increased to a range of 150 mg/day to 250 mg/day. Propranolol can gradually be increased over several weeks to 240 mg/day or as high as 320 mg/day. The carbonic anhydrase inhibitors acetazolamide and methazolamide are effective in some patients with essential tremor, particularly those with head tremor. However, side effects are common, including headaches, sedation, confusion, depression, paresthesias, and gastrointestinal disturbances. Double-blind trials of these agents have demonstrated no proven efficacy when compared with placebo. Benzodiazepines such as diazepam, alprazolam, and clonazepam may improve tremor in some patients with essential tremor. However, benefits associated with benzodiazepine therapy in these patients may be due, in part, to its anxiolytic effects. Side effects include excessive sedation. A number of other agents previously had been tried but showed inconsistent benefit in the treatment of essential tremor. In double-blind controlled studies, gabapentin has proved to be no more efficacious than placebo. In small trials, the calcium channel blockers nimodipine and nicardipine have shown some promise; however, mirtazapine (Remeron) has shown no consistent benefits. Botulinum toxin types A and B have been used for dystonia and spasticity and is now being used as a therapeutic option for selected patients with tremor. Botulinum toxin acts through presynaptic inhibition of acetylcholine release at the neuromuscular junction. Open-label studies as well as double-blind studies have demonstrated the efficacy of botulinum toxin type A in treating limb, head, vocal, palatal, and other tremors.12,13 Parkinson's disease tremor usually improves with dopaminergic and anticholinergic medications. Anticholinergics include trihexyphenidyl, benztropine, and procyclidine. The combination of dopaminergic agents and anticholinergics is effective in tremor-predominant Parkinson's disease. However, the side effects of anticholinergic therapy, such as dry mouth, blurry vision, urinary difficulty, and confusion, may limit the use of these agents. These drugs should be avoided in older patients, and medication should be stopped gradually to avoid severe rebound effect on tremor. Dopaminergic drugs are the mainstay of treatment for Parkinson's disease tremor. Table 5 is a brief list of dopaminergic agents used to treat the disorder as well as the major side effects they may cause. Surgical Management For patients with severe, disabling, medication-refractory essential tremor, surgery is a reasonable treatment option. Surgical management includes ablative therapy through stereotactic thalamotomy or chronic thalamic deep brain stimulation. The ventral intermediate nucleus of the thalamus is the best target for both ablative and deep brain stimulation surgeries. Contraindications for surgical management of essential tremor include unstable medical illnesses, swallowing difficulty, and marked cognitive problems. Similarly in Parkinson's disease, tremor improves significantly after subthalamic nucleus deep brain stimulation surgery. Although these surgical techniques are widely available, they should be used with caution and only after exhausting all possible pharmacologic treatment options. Less common forms of tremor may be treated as indicated in Table 6.14 Pharmacologic therapy should be considered initially for less common forms of tremor such as enhanced physiologic tremor, dystonic tremor, orthostatic tremor, and cerebellar tremor. If pharmacologic treatment fails, deep brain stimulation surgery should be considered in certain tremor types.

On Jan.3 2005, I am having the 2nd part of my back surgery. A great way to start the new year, there goes my new years resolution - I was going to give up doctors and hospitals this year, but that resolution will not last long. When i had the 1st part of my back surgery, i was pleasantly pleased with my doctors attitude towards POTS- he basically trusted me and listen, read, researched and did what I told him to. He discussed everything that had to do with POTS with me. As well as he did for Parkinson Disease. yes, it would be nice to have a doctor that knew everything, but i almost rather have a doctor that makes you feel like part of your health team and listens to you. Anyways, i go in the 2nd-and will probably be there for 10 days. I will take notes on what to do and not to do with POTS and surgery. Hope everybody has a great year. Kathleen

Yes it does sound familar. I am glad you had each other. Please don't get me wrong-i am a positive person 95.9 % of the time but found out that by being so strong and trying to keep that image up - to be an example and to protect my family from knowing how much POTS and PD effect me - that i was causing long term damage. i think that being strong (even or especially when you don't really want to be strong) has pushed me to keep a normal life and keep some functioning. But i have been so strong that my familyand friends do not always understand what is happening to me when the POTS and PD over powers my strength. What i was trying to say- unsuccessfully in my last reply - is sometimes you will feel bad-emotionally and physically- when that happens give yourself a break- don;t feel guilty and just give yourself a break and relax till you have the strength to go on again. Kathleen

sorry-did not come out the wayi wanted. kb

Hi, I just wanted to clear up one thing that was said about POTS being a secondary condition to Parkinson's Disease. Ihave both POTS and Parkinson's- but both my POTS and Parkinson's are considered primary. If i was orthostatic hypotension it would be thought as a secondary condition to PD, because for some reason people with PD lose their sympathic nerves to the heart which cause orthostatic hypotension-the complete opposite to POTS-yes you can go OH with POTS but losing the sympathic nerves to the heart should not be able to make you tachycardia as well. Actually- it is very - very rare to have POTS and PD. But PD can causeother dysautonomias- it just is not known to be the cause of POTS in people with PD. As last I heard- i was the first person NIH saw with PD and POPTS- the doctor did not really believe it. I think he has found someone else-wh has PD and POTS. My test results contradict each other- and basically >i should not have both. So has far as PD is concern- POTS effects PD asmaking life harder for me as PD makes living with POTS harder--but Pots does not make PD progress faster- so far. Kathleen

If you have seen Dr. Grubb and you know what you have and you have a treatment plan-- then there is no real need to see NIH upset if you want to understand how these things can effect you. NIH is a research hospital - to learn more about the diseases. if they can give you a treatment suggestion then they will but otherwise it is to learn more about out bodies. But if there is alot of question still unanswered-or maybe question that are not asked -i would try to go there- But it is not the easiest place to go to. But they might find your case interesting. What is your other condition? I hope this helps Kathleen

Jody, Yes - i think it is worth while, but i would not hold up treatment or learning and understanding- basically i would not put my life on hold. But i would start listing things i want to ask- learn about the work they are doing so you can understand what they are talking about -when they answer the questions. They do not mean to give you complex answers but it is just a complex subject. SO, i keep learning and understanding -while you wait. i felt that the secondtime i was much more an active player instead of a person stunned by bright lights. Kathleen

hi, I will try to explain some of what they do at NIHwithout getting you mixed up. They deal with alot of autonomic dysfunction besides POTS- as orthostatic hypotension and Parkinsons Disease, muliple system dsytrophy, other orthostatic intolerance, and quite a few other things that i have no idea how to spell their names. What they do is give you a bunch of test and take your blood while your doing the test then measure the propties of the blood at that time. An example is taking your blood at different stages of a tilt test. Standing and lying at different times. They might inject you with a certain chemical to see how your blood propities will react- will they follow the normal way-the POTS way- or will it go another direction. I find the test done with the basic evaluations to be the most interesting- during and finding out the results. But one piece of caution i would like to give you- is the staff and doctors are very nice there, but alot of the information and results can be slightly over your head. But still learn as muchas you can -ask question when you can- they are more then willing to answer- especially if your waiting for the elevator or something- because they may not have time to sit down and give you much time after. Also usually-if like me- i was over whelmed and on over load from all the input. Also, the test do effect the POTS and tired me out. As far as the PET scan- they are long - They look at it to see what the chemicals are doing in your body. For me - they were looking to see what the sympathic nerves in my body/heart were doing. But that is because I also have Parkinson's Disease. I enjoyed my time there, but it was not all fun and games-some of those test are difficult and hard on POTS. The people are great. I did learn more about POTS, but my questions were not all answers because there is some that could not be answered. But the best part -is the respect that yougot from the staff-and they made you feel like you mattered. If you want to know more about the test -i will write more about them. Kathleen

Hi, I have been to NIH twice. The reason for the delay is that besides all the new people they take in, they also do retest a year or so later. When I was there last year the secretary showed me the files. They try to get the people that are worst off in first. Also, they might be trying to finish a study- (they have several studies going at once). You also have to think of the time that the head doctor or part of his staff is gone on vacation, out sick, conference or whatever. The reason they can only take 2 patients a week is- they only have the PET scan machine slots 2x per week. The scan is a big part of their study. You do get better understanding from your tests, but they only make suggestions on the treatment. It does take time, and the test can be hard but i think it is worth while to wait and go through with it. Kathleen

Very interesting, but not very funny. Sorry - that just came out. It is very interesting, Idid not know there was so many things to know about tremors. i think you would be very happy with the DBS- start looking into it- so if and when the time comes- you will understand. For everybody else, I feel this is a good lesson in knowing your body and knowing what iswhat and keeping after the doctors till they give u an answer of awarness. I say an answer of awarness because sometimes theywill not find an easy answer or even a hard answer- sometimes all they find is empty answers from negative test. But the important issue is they validate your complaint - then you can document the problem and maybe one day you will complete the puzzle, but in the mean time -if your doctor believeese in u then you will not feel alone and left to drown in the sea of emotions. So-as much as u may want to-don;t give up the ship by losing faith in yourself. observe, learn, understand your symptoms because they are real- they are yours and you need to learn how to live it- the doctors just have to learn to live with u as a patient. Ofcourse- for some of our doctors -it is much more then they ever dreamed of in medical school -unless it was a nightmare. lol Kathleen

Sally, I have had Parkinson for 12 years. and POTS for 4 years. My POTS- is my biggest problem. Idon't really want to mention this but I thought gait and balance problems are some of PD symptoms. I did not know it went with ET ,too. MRI of PD brains are usually normal- Pd can only be seen with PETS scans - i am pretty sure. What can of OI do you have. POTS and PD are very- very rare- i was the first to be seen by NIH doctors- so I would not worry about that - but orthostatic intolerance is more common with Parkinsons. It is all very complicating. Kathleen

Sally, Have you loooked into having the deep brain stimulation operation to help control the tremors. I have Parkinson Disease and hadit done to control the symptoms. I would look into it -when it is time to. Kathleen

hi again, Have you ever heard of restless leg symdrome? IT can causesuch shaking and can happpen in other area of your body, Look it up-you may find some interesting information. Kathleen

And it is not KYRIL BUT KYTRIL........................... sorry- can Iblame my bad spelling on POTS - as POTS makes me potsy!!!!!!!!!!!!!! Kathleen

Zofran not ZoTran. Sorry! Kathleen