Blepharospasm Bulletin Board

Adderall
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Posted by: judith k ®
06/05/2006, 20:26:04
Is anyone using (has anyone used) Adderall (or another amphetamine-like medication) for attention deficit disorder or some similar condition?
I'd like to hear both ways: no side-effects, or side-effects (increased spasms, dryness?) affecting BEB?
Thanks!
Judith K



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Re: Adderall
Re: Adderall -- judith k Top of thread Archive
Posted by: kathy in australia ®
06/06/2006, 01:45:25
Hi,

I used Duromine (phentermine - amphetamine style drug) to assist in weight loss - my eyes popped open and I felt normal for the first time in over a year. When I took one, I was able to drive to visit family (nearly 2 hours away), normally, I am restricted to driving to the shops/school and back and that is only on good days.

Unfortunately, it is not a safe drug to use on an ongoing basis and my GP and specialist will not prescribe it "off-label" for BEB. It is highly addictive, can cause psychosis, lack of appetite, feelings of euphoria and inability to sleep (just a few of the listed side-effects).

Can't win them all!

Regards,

Kathy




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Re: Adderall
Re: Re: Adderall -- kathy in australia Top of thread Archive
Posted by: judith k ®
06/06/2006, 11:11:26
Hi Kathy,
Does 'amphetamine style drug' mean actual amphetamine?
>> *Also, what was the dose you were taking?* (how many MG, how often?)
That's very interesting about your eyes. My eyes (I recently had botox injections again) seem OK most of the time (though I have to be careful because I can have symptoms due to light, stress, smoke, etc., but basically most of the time I have no spasms when the botox is working); what I'm wondering is whether Adderall will have a bad effect (make my eyes spasm) if I take a small dose to help in concentrating. I thought since it was an amphetamine, it might excite the nerves & make spasms worse!
It does not sound as if you had that problem at all, though--
Thanks again,
Judith K
Side effects aren't guaranteed-- sometimes very rare--but they have to list just about everything to cover themselves.



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Re: Adderall
Re: Re: Adderall -- judith k Top of thread Archive
Posted by: kathy in australia ®
06/06/2006, 17:55:38
Hi Judith,

I say "amphetamine style" as I am not a doctor and have been told this. Phentermine/duromine is definitely a stimulant.

I was taking 15mg once a day in the morning - that was enough to keep my eyes open. Whilst on it I lost 8kg in 1 month and had barely more than 4 hours sleep per night. I felt great but people told me I looked terrible - tired/guant/pale/etc. My energy levels were really high - I sure miss that bit!

When Botox is working well for me the spasms are usually gone - the problem is that my eyes just don't want to open - like they are tired or I have weights on the eyelids. It is not ptosis - I have had that in the past and it usually goes after a few weeks. I think this is what the Duromine alleviated.

Interesting that since I have tried the natural "cocktail" including Hypericum and Ginseng I have had some improvement with my eyes - I am wondering if it is the stimulant effect (I don't drink caffeine).

In regards to the Adderall, perhaps you need to try it and see - everyone reacts differently. Just don't try it with a special event coming up!!!

Regards,

Kathy




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Re: Adderall
Re: Adderall -- judith k Top of thread Archive
Posted by: Tatia ®
06/06/2006, 11:11:07
My doctor tried me on Ritalin a couple years ago for my severe fatigue. It did not affect any of my symptoms, fatigue or BEB, one way or the other. The only side-effect I had was some chest pain.



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Re: Adderall
Re: Adderall -- judith k Top of thread Archive
Posted by: Shirley Barr in New Mexico ®
06/06/2006, 15:04:24
I have taken Adderall for several years to specifically help with the relief of my Blepharospasm symptoms. It improves my symptoms and in no way makes them worse. I generally take 5 to 10 mg of Adderall in the morning and Klonopin .25 mg. Some days I don't take it and some days if my symptoms aren't too bad I'll only take half a tablet which would be 5 mg. Other days, if things are really bad, I may take 10mg of Adderall in the morning and then another 5 mg at noon. Anything later than that will keep me from sleeping that night.

It has been mentioned several times on the bulletin board that for some people, stimulant drugs will help or improve BEB symptoms. They could possibly worsen your symptoms too but the only way to know would be to try it and see.

In one of the recent newsletters, it was mentioned that a study is being done on Parkinson's patients with using Strattera (also a stimulant drug)and I believe that Dr. Jankovic is also including some BEB patients as many had asked about it after seeing it in the newsletter.

As with any medication for BEB it does seem that used over a period of time that it loses some of it's effectiveness but that can generally be corrected by stopping it for awhile (taking a sort of drug holiday)and then restarting it.

The only way to know if Adderall will cause you side-effects is to try it and see. For me, it does not...it only improves things for me.

Shirley in New Mexico




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Re: Adderall
Re: Re: Adderall -- Shirley Barr in New Mexico Top of thread Archive
Posted by: judith k ®
06/06/2006, 15:08:57
Thanks, Shirley!

So you are not concerned about Adderall side-effects (BP, heart trouble?)
Anyway what you said is very helpful.
I will ask Dr. J. about Strattera...just read something about it recently, but can't remember what.

Judith K




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Re: Adderall
Re: Re: Adderall -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Nilda in Virginia ®
06/12/2006, 11:44:48
See BEBRF March/April 2006 newlsetter, page 13 for Dr. Jankovic's comments on Strattera study.
Nilda



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Re: Adderall
Re: Re: Adderall -- Nilda in Virginia Top of thread Archive
Posted by: judith k ®
06/13/2006, 09:32:25
Hi,
I have misplaced my newsletter. If you could possibly sum up in a sentence or two what would be relevant to my question, I'd appreciate it very much.
But maybe it's too elaborate to do so. I remember reading something (including posts) about Strattera, but not sure why this would be relevant, but my memory of this is very faint.

Thanks--
Judith K



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Re: Adderall/Straterra
Re: Re: Adderall -- judith k Top of thread Archive
Posted by: Shirley Barr in New Mexico ®
06/14/2006, 12:50:13
Judith, the March/April newsletter stated in the "Ask the Doctor" section by Dr. Joseph Jankovic:

"We are currently conducting a double-blind, placebo-controlled study of Strattera in patients with Parkinson's disease who have so called "freezing", manifested by inability to move their feet as if they were glued to the floor. It has been postulated that "apraxia of eyelid opening" is due to similar biochemical and physiological mechanisms and therefore, I would be interested in studying Strattera in this condition. Apraxia of eyelid opening, manifested by inability to open eyes rather than involuntary closure of eyes as seen in blepharospasm, is a relatively rare cause of abnormal eye closure and is usually seen in the setting of some form of Parkinsonism. As part of our initial pilot study I propose to evaluate and videotape patients before and after Strattera. If the finding is encouraging, we could apply for funding of a double blind, placebo-controlled study, a gold standard in clinical therapeutic trials. Until the results of these studies are available I would not routinely recommend Stattera for apraxia of eyelid opening." End quote.

Shirley writes:
Adderal, Strattera, Ritalin and Dexedrine, to name a few, are all stimulant drugs that are commonly used for attention problems or hyperactivity in children and adults. They all are a bit different and last varying amounts of time. They all may have side-effects as any drug will. As to how it effects you personally, no one can tell you that. People react differently to all medications. I originally started taking Adderall for attention problems and feeling scattered and not being able to get anything done...a feeling of being overwhelmed by the most mundane things. taking one of these medications made me feel "more normal" (and not hyped up). I quickly found that taking it after I developed Blepharospasm and apraxia problems that it helped those symptoms dramatically, also. Yes, they are stimulant drugs and they do/can have side-effects which is why they are closely monitored drugs and are used under a doctor's guidance. Definitely people with heart problems probably aren't going to be able to take them.
Your original question was if one needed to take one of these medications, what side-effects regarding your eyes might be apparent....Would they make your symptoms worse or cause worsening symptoms.
I think that we have tried to suggest that in some cases you might encounter worsening symptoms but in other cases, these drugs might be of benefit and actually improve your symptoms (thus the study being done). What category you might be in, you would only know if you actually tried the drug. It is not a medication that I would be afraid to take thinking that I might have "long term" side-effects. That is just my opinion though. It is a fast acting drug and you would know within an hour if it was going to cause worsening of your BEB or improvement or no effect on it whatsoever no matter what reason you were taking the drug. Some adjustment of dosage might be necessary. In my case, Adderall helps with the apraxia and it also lessens the spasms of my Blepharospasm although Dr.Jankovic's comments do not support the later. But I'm the one with the BEB and not him and I know what Adderall does and doesn't do for me. I'd love to talk to him since I tried to get "anyone's" attention regarding this 4 or 5 years ago at a conference. I just got looked at like I was crazy by the three different doctors that I approached about it and also in a Q and A session.

Judith, I hope this helps with your specific questions pertaining to your situation if I understand them correctly. If not, please ask again.

Shirley in New Mexico




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Re: Adderall/Straterra
Re: Re: Adderall/Straterra -- Shirley Barr in New Mexico Top of thread Archive
Posted by: judith k ®
06/14/2006, 13:49:57
Shirley, you are terrific! Thank you so much for this careful and detailed posting. I think I get the picture now. Dr. Jankovic (as I've said) is my doctor, and I wish I'd asked him about this-- just had my injections May 23.
How much Adderall do you take? I don't know if it's my 'imagination,' but if I take a small bite from a 10 mg (?) pill (one of those oval, scored, turquoise pills), even that focuses me a little more.
In Dr. J's office, maybe 2-3 visits ago, I read an article in a newish magazine, Neurology NOW, have you seen it?"--about 'placebo therapy', and wonder if one could do this oneself. As I recall, the protocol is that people were given their regular meds (I forget for what condition) along with different, and very different-looking, pills that they KNEW were placebos. For some time they took both the med AND the placebo together. Then after awhile, they were phased off the regular med and they still retained the same benefits with the placebo. I thought that was a fascinating finding (obviously you wouldn't do it with, say, antibiotics)...
But 'taking Adderall for attention problems and feeling scattered and not being able to get anything done...a feeling of being overwhelmed by the most mundane things' sure sounds familiar!
Thanks again,
Judith



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Re: Adderall/Straterra
Re: Re: Adderall/Straterra -- judith k Top of thread Archive
Posted by: Shirley Barr in New Mexico ®
06/14/2006, 17:41:25
Judith wrote:
How much Adderall do you take?

Shirley writes:
I generally take 10mg in the am. If I've recently had Botox and symptoms are better, I may only take 5mg. Some days, I don't take any...it just depends on where I am in my Botox cycle and how my symptoms are.

Judith wrote:
For some time they took both the med AND the placebo together. Then after awhile, they were phased off the regular med and they still retained the same benefits with the placebo.

Shirley writes:
That might work for some people and for some problems as the placebo effect can be quite strong but I know that it doesn't work for me with Adderall. I occasionally forget to take it and I'll be wondering why I'm having such a crappy day with symptoms being horrible and not being able to keep my eyes open and I'll go check my pill container and there it is. My symptoms let me know whether I have taken it or not.

Shirley in New Mexico




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