ken870
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Everything posted by ken870
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Wmtate how long did it take for you to get your northera from Lundbeck I have been waiting now for 18 days and I haven't got it yet?
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Dops I did not know you could get Droxidopa now I thought it was Droxidopa was northera.
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I heard it is used to help people with dizziness and fainting when their blood pressure drops when they stand.
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I am wondering if anybody on this forum plan on using northera for their pots and if you do do you think it will help.
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I get that feeling a lot of times and it comes from hard knots that I have in my temples and the back of my head.
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I have vascular knots in the back of my head could this be vascular eds.
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Quick Update On Kayla (Potsgirl93)
ken870 replied to rmlyonsfamily's topic in Dysautonomia Discussion
I will be praying for her. -
It was very helpful thank you very much.
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My doctor told me they were vascular and I have had them since I had pots so a friend of mine who has pots and has the same knots said doctor Grubb told her it was Eds.
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I also have heel pain and knee pain when I sit for a long time or if I stand a long time.
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I was wondering I have knots and sore places on my temples and in the back of my head and someone told me it might be eds so I was thinking what does everyone on this forum think it is and do you have this symptom?
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Kayla the head of this event wanted you to get in touch with her about selling your shirts at the event.
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One more thing the holiday inn there is giving discounts to people who are going to the awareness celebration.
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It is going to be a big event where people with dysautonomia can get together and help each other with ideas on how to cope with this illness while their family and kids will have carnival games and raffles also there will be tshirts and charms there with designs on it showing how dysautonomia affects us the address is 2795 highway 134 at the cox Harley davidsons motorcycle place.
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It is a awareness celebration that will have speakers ,and a festival like setting like vendors,raffles and shirts and bracelets that tell all about dysautonomia also the money raised will help families with dysautonomia with their medical costs.
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I would like to invite all of the members of dinet to attend the dysautonomia awareness celebration being held May the 5th from 10-3 in Asheboro,North Carolina.
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My blood sugar was fine until I was diagnosed with pots now it goes up and down but now it is staying high all the time.
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I have had two doctors appointments the last two months where they tell me my blood sugar is real high so I was wondering if pots patients have diabetes.
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It is according to how long you have worked and how much you put into social security I make over $1700 a month for ssdi.
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My neurologist told me to see the dermatologist because she thought I might have a skin infection on the back of my head that is making it so sore.
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My doctor wants me to see a dermatologist for my pots so I was wondering if anybody else has been to see this type of doctor for pots before you see I have bad head problems caused by hard knots and sore places in the back of my head.
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I was wondering if anybody else on here has sore places and knots on the back of their heads from pots.
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Jen I hope and pray you get your social security but don't be discouraged because when I first applied for benefits I was turned down three times then I got in touch with my senator and he helped me to start getting my benefits by getting me to a pots doctor and showing them how pots is a disability.
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My review was successful they are gonna let me keep my social security and unfortunately they will be reviewing me again but my doctor told me I would be disabled a long time because there is no cure for pots so maybe when they talk to her again the next time I will never get another review.
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firewatcher who in ptc has pots i might know them and would like to meet him or her.