Comments on: Mayo Clinic Teams Up to Help Fight Depression http://newsblog.mayoclinic.org/2009/02/18/mayo-clinic-teams-up-to-help-fight-depression/ Medical and Scientific News and Stories about Mayo Clinic Mon, 13 Feb 2012 14:37:07 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Michelle Gould http://newsblog.mayoclinic.org/2009/02/18/mayo-clinic-teams-up-to-help-fight-depression/#comment-251 Michelle Gould Thu, 12 Mar 2009 01:36:13 +0000 http://newsblog.mayoclinic.org/?p=1039#comment-251 Hi, I am searching to find a "specialist" who can help with a rare condition that my 20 year old daughter suffers from. We live in Utah and I could take her to Ariz. or where ever to get the right help from someone who is willing to take an interest in her case and her unusual condition. She has suffered the last 4 years with what we "think" may be a type of Catamenial migraines and seizures. We have ruled out epilepsy with normal MRI's, CT scans and extended video monitoring with EEGs. There was no sign of any abnormal intracranial leasions or alpha rhythms during the seizures. The pathology of these seizures are very physical and can last anywhere from 1-16 minutes. She has suffered as many as 100 seizures in one day. She has had extensive testing and we have nearly exhausted the usual and customary treatments and tests. We have had "some" relief from stopping her periods all together with oral contraception Yazmine which she has taken for nearly 4 years. She is now having break through bleeding and we are using estrogen in low doses to thicken the wall of the uterus to stop the bleeding. She has hypothyroidism, and has had PCOS and had a cystectomy. She suffers from depression and occasional anxiety but has responded well to drug therapy and cognitive therapy, but the seizures have continued. When the results of the EEG's etc. came up normal, she was diagnosed with Psychogenic-non-epileptic seizures. We have discounted that theory because of "some" success with hormone therapy by stoppig her peiods all together which stops the fluctuation in hormone levels of the estogen and progesterone which excites the brain to have the headaches followed by the seizures. We are so desperate to find a doctor/specialist or reasearch team who has actually SEEN, DIAGNOSED AND TREATED patients with this same unusual condition. I find it hard to believe that there is not another person suffering with the same sypmtoms and spending thousands of dollars on tests with no improvement. We don't want to make the mistake of flying all over the country taking her to one doctor after another and still coming up empty handed. Could you please refer us to someone who would have some knowledge and or an idea of who we could see at the Mayo Clinic or wherever we need to go to get help for this poor girl. We are desperate to find help for her. Could you please direct my email or comment to the proper people? I would love to give more information if needed and would love to just talk to ANYONE who knows SOMETHING about this rare condition. Sincerely, Michelle Gould Orem, Utah Hi, I am searching to find a “specialist” who can help with a rare condition that my 20 year old daughter suffers from. We live in Utah and I could take her to Ariz. or where ever to get the right help from someone who is willing to take an interest in her case and her unusual condition. She has suffered the last 4 years with what we “think” may be a type of Catamenial migraines and seizures. We have ruled out epilepsy with normal MRI’s, CT scans and extended video monitoring with EEGs. There was no sign of any abnormal intracranial leasions or alpha rhythms during the seizures. The pathology of these seizures are very physical and can last anywhere from 1-16 minutes. She has suffered as many as 100 seizures in one day. She has had extensive testing and we have nearly exhausted the usual and customary treatments and tests. We have had “some” relief from stopping her periods all together with oral contraception Yazmine which she has taken for nearly 4 years. She is now having break through bleeding and we are using estrogen in low doses to thicken the wall of the uterus to stop the bleeding. She has hypothyroidism, and has had PCOS and had a cystectomy. She suffers from depression and occasional anxiety but has responded well to drug therapy and cognitive therapy, but the seizures have continued. When the results of the EEG’s etc. came up normal, she was diagnosed with Psychogenic-non-epileptic seizures. We have discounted that theory because of “some” success with hormone therapy by stoppig her peiods all together which stops the fluctuation in hormone levels of the estogen and progesterone which excites the brain to have the headaches followed by the seizures.
We are so desperate to find a doctor/specialist or reasearch team who has actually SEEN, DIAGNOSED AND TREATED patients with this same unusual condition. I find it hard to believe that there is not another person suffering with the same sypmtoms and spending thousands of dollars on tests with no improvement. We don’t want to make the mistake of flying all over the country taking her to one doctor after another and still coming up empty handed. Could you please refer us to someone who would have some knowledge and or an idea of who we could see at the Mayo Clinic or wherever we need to go to get help for this poor girl. We are desperate to find help for her. Could you please direct my email or comment to the proper people? I would love to give more information if needed and would love to just talk to ANYONE who knows SOMETHING about this rare condition.

Sincerely,

Michelle Gould
Orem, Utah

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