ok so, I had been seeing a neurologist for about 6 months for my epilepsy, and then I hadn't seen him for a while until I tried to refill my meds the last time, and ther doctor wouldn't get back to the pharmacy about it, so I called the doctor myself, and he was very rude to me and said he wasn't going to refill my medication, because it had been too long since I had been in to see him. He told me the pharmacy should give me enough until I could get an appointment with him. This totally made me mad because he was putting me at risk by not refilling my SEIZURE MEDICATION, and he was incredibly rude to me. I mean, he could have told me the last time that I got my medication refilled that you know, i'm due for a visit, and that he wouldn't ok the refill the NEXT time unless I went in for an appointment first... so that just really annoyed me, and I hadn't really liked him in the first place. He has a bad attitude, and the major thing was that I had been trying to tell him that my seizure activty seemed to be cyclic- it always happened around "that time of month", and then directly in the middle of my cycle. But he told me that wasn't possible, and then other times when I brought that up, he ignored me.
So now that he did this thing about my medication to me, I decided to look for a new Neuro... so I went to my regular doctor yesterday, and I told him what's been going on, and about how I'm taking 800 Mg of Tegretol a day, but I still get minor seizures at those two times of the month. He said yes, that's entirely possible, because at one point, one hormone in the body is really high while the other is low, and it makes you retain water, so different parts of the body retain water and swell (which, if you're a woman, you know this well. lol), and in some poeople the brain swells, and if people are prone to seizures, the swelling of the brain can trip it off. and the same thing happens directly in the middle of the cycle, but with the opposite hormone. So he gave me an anti-inflammatory that he wants me to take 2 days before I get my period, to see if that makes a difference- so my brain won't swell, and no more seizures!
He said if it works, we're gonna write a book!! lol
and I also got an appointment with a new neurologist on Friday.
I feel so much better now.
I hope this anti-inflammatory thing works!
hehe I just wanted to share that with you all, because I found that pretty interesting.
Kista, the doc was correct in asking you to come in and see him beforehe refilled the script. He is responsible for your care and the effects of treatments he prescribes, so if you need any monitoring while on the meds e prescribes, then you have to go in to see him. That is common practice and is necessary to maintain good health and monitoring whils on medications. The pharmacy should give you enough to last until you get to the appt as the doc said. He was correct, especially since you are not controlled and are having active seizures. Estrogen lowers the seizure threshold making one more vulnerable to having a seizure. Estrogen is higher near your period. Progesterone raises thethreshold which can make one a little less vulnerable to seizures. The Progesterone level drops just prior to onset of your period which is what allows the lining to break away and produce menstrual flow. I have read that some people take Diamox near their period for the reason you mentioned re the fluid. Having seizures that are affected or triggered by the hormone levels is called Catamenial epilesy. That word only refers to the fact that hormones seem to have a direct effect, and does not refer to the type of seizure nor the type of epilepsy. My docs never told me any of this, but the Catamenial info is relatively new although it was been proven approx 10 years ago or there about. Your doc was correct abt the need for the appt, and you should be seeing him since you are on meds and not controlled. I know of no doc who would give a patient meds without having a good idea how the med was working and if there were any untoward effects going on. If it turns out that there is a different/better med now or that he needs to adjust what you are taking since you are not controlled, he has to see you to do that. Tattoo
thanks for the reply, and yes, I understand I should be seeing the doctor once in a while so he can check up on how I am doing, but the thing was the way he acted about it, and how rude he was about it, and how he kind of did it without warning. It was sort of the straw that broke the camel's back, because there were other reasons why I didn;t like him in the first place.
Krista... I feel your pain on the rude thing. I haven't been on my medicine for about a month. Well I of course really didn't know what to expect so I called him a couple times and went in once just to see if what I was experiencing was normal. I had been having chest pains... he said well you have been sick with sinus stuff and I'm not a nose doctor I'm a nerve doctor. I thought that was awful. I wasn't asking him to "fix" my sinus problems... I was there concerned about some of my side effects of the meds considering I hadn't been on them long.... I mean come on... anyone that starts new meds is worried about why they are experiencing unpleasant side effects. He then says.... only thing you have to worry about is the rash.... if you get it call me. I was like... I don't know... I felt so stupid when I left there. I don't think that is the right way to treat a patient concerned with his/her life. I think every doc that prescribes seizure meds should have to take them for a month and titrate up like we do... just so they know what they are talking about.
I learned that if I want my doc to be attentive to my needs, I have to keep him the loop so to speak and that means going to see him once in a while. If I don't, that basically means that I accept full responsibility just about it for the effects that could occur from the meds he prescribes becausehe cn't treat me and care for me if I don't. Phone calls aren't enough. Also, if I just call my doc and he does not see me, besides not being able to visualize my ststus as in walking and other neuro exam data, he does not get paid a thing for his work. It is best for both of us if I go in to see him so he can give me a more thorough assessment and he can get paid. We both win. It makes for a good doctor/patient relationship all the way around. You may not know this but managed Care has caused docs and hospitals to take a beating. I do know some that are closing their doors because they cannot pay staff. My uncle is one of those who did this. Managed Care and other insurance companies drag their feet in paying their bills so bad that in order to get anything out of their work, hospitals and some docs will have to lower their price waaaay below what it is actually worth. That isn't fair. I wouldn't like that at all if it were me. No one would. It is one of those factors, a big one, that has directly helped to cause the Nursing shortage. Hospitals want to keep their budget looking good, and without funds coming in, they will not hire adequate staff because it will affect the budget. So, go in and see your doc. If you do not like the doc in the first place and he does not give you good care, find another. I have done that too. People seenm to think that all docs are rolling in money, but the truth is that now days, that may not be the case at all. Not as a blanket rule anyway. Tattoo
As far as I'm concerned, Doctors (and many other members of the health care field) have, by virtue of their jobs, taken on the responsibility of providing quality. professional care to their patients. I am sorry if things in the health care field are being negatively effected by managed care companies, and that they are losing money....THAT IS NOT OUR FAULT!!!!!! I have spent way too many hours being treated like a low class citizen because a Physician has forgotten his/her pledge to "do no harm" while providing low standard care to me. I agree that there are many problems in the health care field, but I am sick of hearing the excuses and being a victim of frustrated health care "professionals?"
Yes, it is important to receive regularly scheduled medical care for follow-ups while on seizure meds, BUT it is NOT O.K. to be reminded of that fact in a demeaning way. We (patients)need to begin to be better self-advocates. If a health care professional does not treat us in a professional manner, we need to find one that will. WAY too much money is being wasted on sub-standard care! I do not wish to offend anyone, but I have wasted countless hours sitting in waiting rooms, or walking away from an appointment feeling frustrated with the level of care I have received. We do have a choice.....we can insist on receiving referrals until we find a Doc that we are satisfied with. Thank you for allowing me to vent. :ANGRY: Kathy
When Mamma ain't happy ain't noone happy!
Kathy. I agree with you. For me, it wasn't the wasting of my time in the doc's office. I spent from age 14 to age 47 in the hands of general neuros. Since no seizure control was ever reached during that time and since in that 33 years, not one general neuro ever mentioned a specialist, I consider that to be a grave injustice as well as negligence. To knowingly continue to give a patient more AEDs when the statistics are as they are regardng AEDs and Complex Partial seizures rather than providing the best care available, the Epileptologist seems to meet the definition of something akin to premeditated malpractice. I feel I, too, have wasted a lot of years and a lot of life while general neuros played with meds rather than refer me on to a Specialist, Epileptologist. I can cite examples where I was treated with great disrespect and negligence and can name those involved. However, what I wrote above is true and does need to be considered. I am not at al making excuses for unprofessional behavior because there is no excuse for that. Please be aware that even though Managed Care companies were supposed to serve as a measure to prevent misuse of care and prevent unnecessary treatmnts, they have also seved to cause harm in more ways than one. I know this from more sides than just that of the patient, but I have experienced it from the patient standpoint as well. I am well aware of the feelings of frustration and anger you feel because I have felt the same. My last doc just retired and was the one doc who did treat me with respect. The one who has taken his place did not return my phone call when I called with a concern. My concern was totally blown off. I have also lost respect for my Comprehensive Center, too. I will not go out of my way to make other patients aware of this Center. I feel I have done my duty so to speak. Tattoo
I think we all need to stick together and support better healthcare all around. I won't pretend to have the answers, but I do know that we are in big trouble in this country when it comes to healthcare. I am spending over $300. monthly to "buy into" my husband's HMO, which supplements my medicare, and I am still swamped with medical bills. All this, and oftentimes I receive inferior care.
As far as insisting that I be treated with respect, it comes from FINALLY feeling good enough about myself to know that I deserve the same treatment I would expect to give. It is all so frustrating!
If only we could run the world....we'd have ALL the answers....eh!?! LOL Kathy
When Mamma ain't happy ain't noone happy!