chocolategirl

Hi Deucy! I've been reading this forum off and on for the last couple of years but am a newbie at posting and participating. Reading about the experiences and treatment of others has helped me over the last couple of years and I decided I needed to join in with the group. I was diagnosed in Aug 2002 - clearly post-viral with very rapid onset of POTS. I experienced what many on this forum have experienced... being batted around to numerous specialists looking for a diagnosis. I was not able to work - not able to be on my feet for very long. Nobody knew what it was. Looking back I see that the signs were clearly there, even on the tests they were using. For example, I had a holter monitor for 24 hours and the doctors said that it showed nothing. ( I was frequently feeling palpitations - though perhaps not that day.) I look at the report now and see that my heart rate was 150 bpm for an hour or more and, if they had asked me, they would have known that I WASN'T exercising. That should have been a red flag... Anyway, back to your question, after I was diagnosed and they prescribed TOPROL-XL, ProAmatine, Florinef, and Salt Tablets, I started feeling better. But I never regained the stamina to work long hours as I could before. With my job there was considerable travel and flights, particularly long ones, usually put me in bed for a day or two. Finally I found that the travel on top of work was doing me in. I often couldn't work at least one day of the week and always ended up coming home on Fridays only to lay in bed all weekend trying to recover. My body was steadily getting more and more worn out and symptoms were becoming more severe. Finally, last year, I resigned. It was scary since I am single and have no one to back me up financially. But, I had to get better and figure out what to do next. I ended up starting a business that I had dreamed of for years. I make chocolate. I just recently rented some retail space about four blocks from my home. I did this based on faith that I could work enough hours each day to sustain the business and I would have more control over my schedule. The shop won't open until February and I am somewhat concerned about my ability to succeed. My sister visited me from Colorado for 2 weeks this past month and helped me in fulfilling all of the Christmas orders. It was great to have the help but also sobering to see that she, at a youthful 65 years old, was able to work twice as much as I can, at a youthful 41 years old. On one of the days, we were trying to fulfill a big order and worked from 10AM to midnight. I felt pretty good during that time but awoke in the middle of the night with a screaming migraine. I ended up in bed for two days feeling like I had been hit by a train. I was hurting everywhere and incredibly fatigued. It took two more days for me to start feeling normal again. So, the reality that I recognize is that I MUST pace myself. I can't push through the long hours anymore. In fact, 8 hrs is the MOST I should attempt even on the days that I feel able to work. Lots of rest is critical as well as lots of ProAmatine. I agree with a former post that your dose of ProAmatine sounds low compared to mine. I take 10 mg three to four times each day if I'm upright. However, everyone is different and I know one person who only takes 5mg in the morning. So maybe your dose is perfect for you. Just know that if you are still having lots of symptoms, increasing the dose, after discussing it with your doctor, would be entirely reasonable. I'm also sad to hear what the neurologist said to you. I consider my condition moderate compared to some who are completely bedridden and others who can function quite well with a minor dose of drugs. So, I don't think it is ones ability to "push through" as much as it is just differences in the severity of the condition. Maybe you can use the article published by Dr. Grubb earlier this year to help educate the officials who are deciding on your appeal. He makes it quite clear that patients with POTS can have considerable difficulty with everyday tasks. Also, I was a manager several years ago within the State employee system, and the first thing that I thought of was talking to HR. Generally they are bound to a considerable level of confidentiality and they also are well-versed in the potential for lawsuits. Violating the ADA is quite serious and I think that your supervisor is treading on very thin ice. I would love to know if you've spoken with HR already or not. It usually IS very difficult to terminate someone within the government, so I would also be surprised if your appeal was not granted. If that happens, I wouldn't hesitate to contact a GOOD EEO and ADA attorney. Well, that's plenty from me. I wish you GREAT luck in your effort to maintain your position. Keep us informed and don't hesitate to ask for more support.

I have migraine headaches almost daily now. I take Zomig for them or sometimes Vicodin and Soma when the cycle continuously persists. I've tried Topomax and Lyrica but found that both of them make me anxious. Has anyone else had this experience??? I should add that I've had a chronic anxiety order with concomitant major depressive disorder since I was 13. I took nortriptyline for years, rather successfully. But, when I acquired post-viral partial dysautonomia in 2002, my cardiologist encouraged me to find an alternative (nortriptyline can increase tachycardia and hypotension). After a '****-uv-a' year last year, I was in the deepest depression of my life. I worked with a great psychiatrist to develop a cocktail to alleviate the anxiety and depression. Now I take Cymbalta 120mg, Wellbutrin 450mg, and Lamictal 100mg... in addition to the Toprol-XL 25mg, ProAmatine 10mg tid or more, and Florinef. I dont' mean to ramble... I'm just wondering if anyone else has had anxiety as a side effect of Lyrica or Topomax, or if perhaps it is more of an interaction with my psych drugs causing them to not control my anxiety so well.

I was diagnosed with "Neurocardiogenic Syncope" in 2002. Since then, I've read the literature extensively and have found that POTS is more accurate and in the recent article published by Dr. Grubb, et. al., I could be categorized in the post-viral partial autonomia branch. The onset of my condition was rapid following an unknown viral illness. My condition hasn't progressed, generally. However, I began having migraines for the first time in my life when this started. About a year and a half later they became more severe and debilitating. Now, I have great difficulty managing them and have them at least 20 days out of a month. So that symptom has seemingly progressed.

"Feeling drunk" was my most common description of my main symptom before I was diagnosed with POTS over 2 years ago. I couldn't find any other way to describe it. I've since come to the conclusion that it IS the result of low oxygen levels to the brain. Often it is associated with low blood pressure too; however, I believe it was Dr. Robertson at Vanderbilt who published a study demonstrating that even though arterial pressure may look normal for a POTS patient, they can still have a 30% decrease in cerebral perfusion when standing. It is my belief that this is what causes the drunk feeling. My meds help tremendously - TOPROL-XL and PROAMATINE... but I almost always feel drunk at some point during the day. Take Care!