No Med More Seizures

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Porkette

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Hi Folks,

In the 45 yrs. I've had seizures I've never heard of a drug co. stopping a med or having a shortage of the med. but for almost a month now the one drug I take Diamox Sequel (brand name) can't be found even by the local hospital so I had to cut myself back on the drug 500 mg. so the med will last longer and I've had seizures each day. My neuro can't do a darn thing about this and I'm a little scared if the seizures will end up putting me away for good they are getting so bad. I've called the drug co. and written to them and all they keep saying is we have a shortage. I hope none of you have to go through this same mess as I have to deal with and I wish all of you only the best. May God Bless You!

Sue
 
Sue, I'm so sorry there's still no resolution. You need the meds! I hope you can hang in there. Did your neuro say anything about getting you some ativan for short-term use? It might be worth a try as a "bridge med until there's more Diamox.

It won't help in the short-term, but maybe you could contact your reps. in Congress to let them know that this kind of drug shortage is serious and life-threatening. Drug companies should be monitored to try and prevent this kind of thing in the future.
 
I'm sorry to hear that, Sue. Have you or your doctor considered putting you on the generic? I totally understand if you prefer the brand name (I'm the same way), but in this case, maybe the generic is better than nothing?

Just my:twocents:

Hope the drug company gets the shortage straightened out soon.
 
Hi Nakamova,

I let my neuro know about the drug shortage but he never mentioned anything about Ativan I will drop him a message and let him know. I am going to let the governor here know what's going on and how this is life threatening. So far I've had 15 seizures this past month which is sky high for me. Thanks for your support and understanding May God Bless You!

Sue
 
Hi txtiger,

Thanks for your support I've also tried the generic brand of Diamox and it won't work for me like the brand name also I found out that the generic form of Diamox is under a shortage now. I'm going to let some of the politicians know what's going on in my area and maybe they can help get this matter straightened out. Wishing you only the best and May God Bless You!

Sue
 
I I think Ativan now banned on NHS maybe America following same route.
I thought you can get anything in Canada uk can' States can ,certain unfairness when Union Jack on their flag and queen head of state but digress.the amount Meds cost in States be better off getting fram Canada
 
Hi Folks,

I sent my local news the info. about the drug shortage and to my surprise if they can get a Dr. to speak with about this matter they want to interview me and find out
more of what's going on. I will probably know for sure by Monday. Thanks again for all of your support and May God Bless You!

Sue
 
Sounds good thing.That sort of media helps people who need these medications
 
Hi Folks,
The drug co. called me today and gave me the run around that they MIGHT have the drug out in 2 weeks but nothing is for sure. They refused to tell me why they aren't making the drug something fishy is going on here and I don't like it at all. They didn't even care that I was having seizures. Take care and May God Bless All of You!

Sue
 
Porkette,

Sorry to hear. What about the cannabis oil? Isn't that helping? If not, maybe you can try a different one. I know you're drug resistant, but maybe another anti-seizure med or combination of meds would help.
 
Hi Music36,

My neuro wants to try me on the generic form of Diamox but I've tried it in the past and it didn't work at all. I've increased the cannabis oil but it hasn't helped much but I think that's do to all the stress from this matter. Hopefully things will get better especially when I get my lawyer after them. I wish you only the best and May God Bless You!

Sue
 
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