Posted by: Marilee ®
01/28/2007, 14:06:21
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Hi, Nancy.
Are you saying the cough syrup is the only thing you use? Or is it in addition to Botox and/or other meds?Thanks.
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Posted by: Nancy Fallon ®
01/28/2007, 16:23:45
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It's the only thing I use. I take one dose of Delsym in the morning and it lasts the day. It's a 12 hour formula. I tried some other brands at first, but you had to take multiple doses throughout the day and it's hard to find any of the generic types that aren't a combination cough/cold medicine. It's been wonderful for me. After almost giving up talking because it just wasn't worth the effort to make myself understood you can hardly shut me up in meeting now! Good luck with finding something that helps you SD. Maybe this will be just the thing for you too! Nancy
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Posted by: Paula B ®
01/28/2007, 15:03:08
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Hi Nancy,That sure sounds very interesting. You mentioned taking Delsym. Is that the name of the cough syrup? Where would I be able to get some? I wonder?? Since I am on a botox injection right now, when it wears off, would that prolong a good voice? That might be worth a try. Thanks for mentioning this. Take Care, Paula
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Posted by: Nancy Fallon ®
01/28/2007, 16:28:55
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It is a cough medicine and most of the drug stores and places like Walmart, etc carry it. In my area Target has the best price. There is an adult strength and a childrens' strength, so be sure and get the adult strength. It's in an orange box. The 5 oz bottle lasts about 2 weeks at one dose a day. Good luck! Nancy
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Posted by: saradshort ®
01/29/2007, 11:25:00
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Oh and one other question...what is the active ingredient that is considered to be responsible for having the beneficial effect on the SD? Just curious...
Sara
AD/SD
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Posted by: Bill Vanderlinde ®
01/30/2007, 08:26:18
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Sara,
The active ingredient is called dextromethorphan. If a standard dose of this medicine works for some SD people with no side effects then that is great for them. However, over-the-counter medicines like this are not intended to be used on a daily basis for extended periods of time. I spoke to the researchers at NIH and they strongly discourage people from experimenting on their own with dextromethorphan because of possible health effects of high dose/long term use. I would suggest you discuss this with your doctor before trying it. Here is further information I copied from the Delsym website: Delsym Product Labeling (Drug Facts) Active Ingredient (in each 5 mL teaspoonful) Dextromethorphan polistirex equivalent to 30 mg dextromethorphan hydrobromide Purpose Cough suppressant Use Temporarily relieves cough due to minor throat and bronchial irritation as may occur with the common cold or inhaled irritants Warnings Do not use if you are now taking a prescription monoamine oxidase inhibitor (MAOI) (certain drugs for depression, psychiatric or emotional conditions, or Parkinson’s disease), or for two weeks after stopping the MAOI drug. If you do not know if your prescription drug contains an MAOI, ask a doctor or pharmacist before taking this product. Ask a doctor before use if you have: chronic cough that lasts as occurs with smoking, asthma, or emphysema cough that occurs with too much phlegm (mucus)
Stop use and ask a doctor if cough lasts more than seven days, cough comes back, or occurs with fever, rash, or headache that lasts. These could be signs of a serious condition. If pregnant or breast-feeding, ask a health professional before use. Keep out of reach of children. In case of overdose, get medical help or contact a Poison Control Center right away. DOSING DIRECTIONS: Shake bottle well before use. Dose as follows or as directed by a doctor. AGE (YEAR) DOSE (1 teaspoon = 5 mL) TOTAL DAILY VOLUME
Under 2 Years Consult Physician Consult Physician
2 to Under 6 1/2 teaspoonful Every 12 Hours Not to Exceed 1 teaspoon Every 24 Hours
6 to Under 12 1 teaspoonful Every 12 Hours Not to Exceed 2 teaspoon Every 24 Hours
12 and Older 2 teaspoonfuls Every 12 Hours Not to Exceed 4 teaspoon Every 24 Hours Other Information: Each 5 mL teaspoonful contains: sodium 6 mg.
Store at 20°-25°C (68°-77° F) Inactive Ingredients: Citric acid, edetate disodium, ethylcellulose, FD&C Yellow No. 6, flavor, high-fructose corn syrup, methylparaben, polyethylene glycol 3350, polysorbate 80, propylene glycol, propylparaben, purified water, sucrose, tragacanth, vegetable oil, xanthan gum Bill V.
AB/SD
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Posted by: Nancy Fallon ®
01/30/2007, 12:38:16
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Bill and Sara, This is all excellent information. I did try several different brands and dosages of cough medicine on my own for a couple of weeks to see what my results were, always within the recommended dosage and frequency, but once I determined that it was working I consulted with my doctor to make sure there were no safety concerns for me. I would certainly recommend that anyone, especially if you have other health concerns or are taking other medications, check with their doctor before continuing long term. In my case the results were so immediate that I didn't need to exceed the recommendations that came with the medicine before I knew it was helping. I settled on the Delsym because it was the most convenient since I only need to take it once a day (plus as a side bonus it tastes the best by far of any that I tried). Once again, as Bill pointed out, it is prudent to check with your doctor before long term use of any medication. I'd love to hear if others try this and what their results are! Also, what other people's doctors have to say about it. Nancy
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Posted by: Bill Vanderlinde ®
01/30/2007, 15:51:24
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Hi Maria,
That is a link to the study performed by Dr. Christy Ludlow's group at NIH in Bethesda, Maryland. By the way, Dr. Ludlow is a medical advisor to NSDA.
Yes, I have heard of teens drinking large doses of cough syrup to get high, something like sniffing glue and probably about as safe.
Bill V.
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Posted by: saradshort ®
01/29/2007, 11:23:27
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Nancy,
Do you have AD or AB SD? I have tried Delsym before, but only for a cough and it works GREAT for that too. This is very interesting news. My last Botox treatment is about to wear of and I'd love to prolong the good voice. Maybe I can check with my ENT.
Thanks so much,
Sara
AD/SD
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Posted by: Nancy Fallon ®
01/30/2007, 12:24:14
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I have AD SD. I checked with my doctor after a short trial on my own to make sure what I was doing was safe for me. Please keep me posted on whether you try it and if it works. Good luck! Nancy
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Posted by: Carole Nagel ®
01/30/2007, 05:08:50
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Nancy,
I'm going to try Delsym, got some yesterday. I feel like I'm grasping at straws, but my husband says, "What have you got to lose". How long did you take it before you saw any results? I've had AB/SD for 25 years and tried lots of things. I don't live anywhere near a Speech Therapist, so that's out. I was a Speech Therapist but never had any voice students and have forgotten everything I knew. It's been 25 years since I quit teaching. The primary reason was SD.
Carole
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Posted by: Nancy Fallon ®
01/30/2007, 12:20:14
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I don't remember exactly, but the results were almost immediate, certainly within a few days. I didn't tell anyone what I was doing so they wouldn't be expecting any changes, but my husband and people who worked with me (including the speech therapist)noticed a difference almost at once. I did check with my doctor after experimenting on my own for a few weeks. I never took more than the recommended dosage or frequency. Good luck! Nancy
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Posted by: pat rambo ®
01/30/2007, 11:22:31
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Wow-it's great to hear of another SDer who found an alternative to Botox.
I'm also a Physio-5 years retired.
I was grateful to have botox at first and I know it's a lifesaver for many people; however it only helped me on a very limited basis.
After 2 years of Botox,it wasn't really enough for me,and I almost had to take a disability pension-I was about 53 at the time.
I took a stab at Vitamin B6,and {for me,I must stress}it worked.
That was 12 years ago.For several years the spasms were 95 % gone.
In the past 2 or 3 years,I've had problems with some of the consonants,especially Bs and Ps.
I continue to take 50 mg. of B6 daily,but will also give Desym a chance.
Good luck to everyone who tries it.
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Posted by: pat rambo ®
01/30/2007, 12:06:59
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Hi Nancy,
I'm also a Physiotherapist,and ADSD.
I tried posting a reply to your post,but,for some reason,it didn't show.
Would you please email me at prambo@cogeco.ca.
Thanks,
Pat
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Posted by: mariaa ®
02/01/2007, 15:56:04
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I use Benedryl and it helps, now I am trying antivert which is dramamine. I have dizzy spells and by coincidence found out antivert helped not only my dizziness but my voice. My neurologist and ENT confirmed antihistimines do help.....In my case its remarkablt. I have ab/sd. I am still thinking of botox because I dont like the idea of medication all the time.
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Posted by: Carole Nagel ®
02/02/2007, 05:52:18
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Nancy,
I've been taking the Delsym 4 days now and yesterday my husband and I both noticed my voice was better. I had to go to the Dr. fasting so didn't take it and I was struggling by the end of the session, so as soon as I got out I took it and the voice got better again.I'm afraid to hope, but any day I don't have to struggle is a blessing. Thanks for the info. If it helps only one person it is worth knowing there is something else to try. Carole
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Posted by: Nancy Fallon ®
02/02/2007, 12:26:30
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Carole, I'm so glad it's working for you! To me it felt almost like a miracle. Like you said, if it helps even one person it's worth a try. We can just hope it doesn't quit helping after a while, but I've been taking it for about 4 months now and it's still working great. If it quits tomorrow, I'll still be grateful for the time it gave me with a near normal voice. Good Luck!!! Nancy
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Posted by: Will Blum ®
02/02/2007, 15:35:23
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Here is a warning and helpful information about Delsym.
Dextromethorphan, an ingredient in Delysym, is a cough suppressant used to relieve a dry, hacking cough. Take this medication by mouth as prescribed. Do not increase your dose or TAKE MORE OFTEN THAN DIRECTED. If the cough worsens, last for longer than one week or is accompanied by a high fever, notify your doctor.If overdose is suspected, contact your local poison control center or emergency room immediately. US residents can call the US national poison hotline at 1-800-222-1222.
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Posted by: jackmac ®
02/02/2007, 18:00:29
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My botox was just starting to wear off when I first read your post about Delsym. I had tried a different cough syrup before with very little effect. I must say that I can tell a difference with Delsym. I noticed a difference shortly after my first dose. It takes that sharp catch off of my speech so I don't have the "stop in your tracks" situation when speaking a sentence. I have been taking a dose in the morning on an empty stomach then eat after a 1/2-1hour or so. Definately has given me hope. I am knocking on wood right now!Jack
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Posted by: Carole Nagel ®
02/02/2007, 21:17:45
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I saw my Dr. yesterday and took the Delsym with me and asked him if it would hurt me to take this on a regular basis and he said it wouldn't so I'm going for it. Had another good day today and called my dear friend, 85 yrs. old. I haven't called her in ages because I couldn't talk. What a blessing.
Carole
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Posted by: concrnd ®
02/02/2007, 22:29:10
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Folks remember that if any of you develop problems with delsym you read a warning first herehttp://www.associatedcontent.com/article/110944/dextromethorphan_the_dangers_of_poor.html While the maximum FDA approved dose of dextromethorphan is 30 mg [9], in significantly higher doses of 150 mg to 2000 mg, dextromethorphan is recreationally used as a dissociative drug that can cause depersonalization, euphoria, dissociation, dreamlike mental effects, visual and aural hallucinations, and in sufficiently high doses, out-of-body experiences. Some use high doses for spiritual purposes or to attain a greater self-knowledge. The recreational effects of dextromethorphan typically last between 4–8 hours, although the duration may increase with higher doses (12–48 hours) and may be greatly extended in individuals with a variant CYP2D6 allele (approximately 6–10% of the white population).
The author of the DXM FAQ, William White, opined that the levels of the DXM experience come in dose-dependent stages, or "plateaus," with each plateau possessing different characteristic effects [10]. Some users observe distinctive differences between each plateau. Further information on DXM and DXM's plateaus may be found in Erowid's DXM Vault. This system for distinguishing doses is very popular within the DXM community. It is common to see the plateau system discussed (with varying accuracy to the original specification) on DXM web sites and news articles.
Lower doses of dextromethorphan are characterized by a mild intoxication and euphoria similar to a combination of MDA and alcohol, due to its serotonin and dopamine reuptake inhibition. Often, audio intake is altered, leaving the user with an altered perception of sound. This alteration causes the brain to process sounds slower, making music sound more defined and bold. Frequent users of dextromethorphan frequently emphasize how much music often adds to the pleasure of a DXM 'experience'.
Moderate doses tend to decrease agility, coordination and affect the user's perception of time. Many users of the substance report that the coordinative effects of dextromethorphan create the feeling that one is a 'thick fluid.' Sound may take on a flanging effect and the user may have difficulty distinguishing distances between objects. Dissociative cognitive effects become apparent, resulting in the user feeling "detached" or "disconnected" from reality. Closed eye hallucinations may be observable.
High dose effects have been compared to the effects of ketamine, a dissociative anaesthetic frequently used in veterinary treatment as well as extramedically. The higher dosages can also exhibit a significant depersonalization and dissociation, bizarre thought patterns, and the user often feeling completely disconnected from external reality. Users may also feel as if they are part of an object or universe. Marked changes in sensory perception are unescapable and can include lilliputian hallucinations. Coordination is significantly impaired, and many users are unable to move comfortably. Possibly linked to this significant coordinative impairment, a 'chaotic blindness' may be experienced by some, in which the brain may be so confused and overloaded with sensory information that it has a significantly difficult time processing visuals. Out-of-body experiences and religious experiences are common. Extending the duration of the DXM trip through pre-dosing (taking multiple "booster" doses throughout the day before the main dose) may bring about a separation from reality which has much in common with forms of psychosis: extreme schizophrenic hallucinations, such as hearing voices or music, seeing entities with eyes open, and experiencing a total breakdown of reality. Reliving or viewing of past memories is also common. Dextromethorphan becomes toxic at 10 mg per kg of bodyweight, producing vomiting, fever, and elevated body temperature.
Side effects of using DXM include "robo-walk" (when someone on DXM loses coordination and has difficulty walking, and reportedly walks like a robot), discoordination, trismus and bruxia (clenched jaw, teeth-grinding), vertigo, and pupil dilation.
Negative effects can include fever, diarrhea, vomiting, and severe nausea. Using DXM can also cause hangovers on the following day, but DXM users refer to the DXM hangover as an "afterglow." [11]
Some DXM mixtures, notably Delsym, have the active ingredient listed 'Dextromethorphan Polystirex' on the bottle. This is a compound that breaks down more slowly than the usual preparation, Dextromethorphan HBr, and therefore extends the DXM's half-life to 10–12 hours, resulting in a longer DXM experience [12].
Related link: dxm delsym warning
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Posted by: Nancy Fallon ®
02/03/2007, 08:36:37
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Please note that the effects refered to in the above posting concern doses much higher than the recommended dosages. Many drugs can be misused at high dosages, but are quite safe at recommended dosages. I had questioned my doctor about extended use and he did not have any concerns, but as I stated in a prior posting it would be wise to consult your doctor before using differently or for longer than recommended on the packaging, especially if you have other health concerns or take other medications or supplements. Nancy
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Posted by: Paula B ®
02/03/2007, 11:20:05
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Wow!Thank you so much for putting this here concrnd! I was thinking twice about this cough medication when Will posted an alert, but my thoughts swayed when I heard how good it was from others. After reading your post I realized that taking a cough suppresent when you are not sick, or do not have cough symptoms is like taking something for your health that is bad for you. Just because someone says it's good for them, or it worked, it hasn't been tested for a long term effect. A cold or a cough usually lasts for a week, not for 4 months, or a lifetime. When given botox injections, the botox wears off in time. You can tell when the botox leaves your body. Botox doesn't effect your mind like dextromethorphan does. If this cough suppresent ever starts to effect your mind, how safe would it be to walk, or even drive a car? Please realize that taking too much of anything is bad for you.. I just had to post my thoughts here, Take Care, Paula
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Posted by: Paula B ®
02/03/2007, 11:42:48
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I just went to the Delsym Cough Medicine Site and read this.Stop use and ask a doctor if cough lasts more than seven days, cough comes back, or occurs with fever, rash, or headache that lasts. These could be signs of a serious condition. This adds to my decision to stay away from this drug. Paula
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Posted by: jackmac ®
02/03/2007, 14:00:58
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Hi, I understand everyone's concern about the use of this cough medication and I understand the risks that are known. I think this statement is refering to the cause of the cough and not the use of this medication itself. Jack
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Posted by: Will Blum ®
02/03/2007, 19:44:43
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Delsym has dextromethorphan. Improvement in a person's sd can be a side effect of dextromethorphan. I copied this information from http://www.drugs.com/mtm/dexbrompheniramine__dextromethorphan__and_phenylephrine.html
"What are the possible side effects of dexbrompheniramine, dextromethorphan, and phenylephrine?
• Serious side effects are unlikely to occur. Stop taking dexbrompheniramine, dextromethorphan, and phenylephrine and seek emergency medical attention. If you experience an allergic reaction (difficulty breathing; closing of your throat; swelling of your lips, tongue, or face; or hives)."Closing of throat and swelling of lips, tongue or face may improve a sd condition. When some people get a cold their sd improves.
Related link: Side Effects f
Modified by Will Blum at Sat, Feb 03, 2007, 19:51:08
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Posted by: D Phillips ®
02/03/2007, 12:55:58
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I got some and took it for three days. There was no improvement for me but then it may have been because it put me to sleep!!
Dia
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Posted by: Laurie ®
02/03/2007, 15:12:35
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Hi, Dia & All,I don't think it's unusual for DXM to not help your voice. I know the preliminary results of the NIH studies have shown that it is not a potential effective treatment for SD so I don't see the reason to run out and take it long term. I bet the long term effects of DXM (at recommended doses - not talking about abuse) are not know as there are currently no indications for such use. I think because it's OTC, some doctors may think it's harmless. Just because they are doctors doesn't mean if they say it's ok then all is good. If something showed more promise in controlled studies, I might be more inclined to try it but I wouldn't encourage SD patients to run out and become long-term DXM users in light of the current research. Laurie
Modified by Laurie at Sat, Feb 03, 2007, 19:52:11
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Posted by: Valerie Handelsman ®
02/06/2007, 12:30:16
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I just spoke to someone for the NHI about a study they are doing on this same subject. I would like to participate over the summer and will send my paperwork soon; after my disability hearing has concluded. It's hard for me to support SD financially so I thought I can support the cause this way.
What brand of caugh medicine do you take?
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Posted by: Nancy Fallon ®
02/06/2007, 13:49:54
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I take one of Delsym a day. I tried several brands, and this one is the only one that I found that does not have extra ingredients and that lasts 12 hours, so it's the most convenient for me. Good luck! Nancy
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