Question:

Is anyone else having problems getting your health insurance company to cover your pump supplies?  I have Humana PPO and up until this month they were covering me no problem, or so I thought.  I just found out they haven’t been paying their portion of the bills.  They are contracted to cover "70% of Medicare guidelines" yet there are no guidelines for the pump because it is not considered medically necessary.  They were able to override this until January 99, when their computers reprogrammed.  And I am just finding this out now.  I need advice.  HELP!  Thanks.  You can e-mail me responses.  Melissa

Response:

I too have Humana PPO.  Latest rumor is that we will be required to use generic medications.  If we do not do so Humana will only pay generic cost and we will be required to make up the difference.  I dont know what they plan on doing about diabetic supplies or brand names that do not have generic counterparts. This rumor comes from a letter my wife received from Humana last week. Joe Reardon    

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Question:

On 4/22/05 9:00 AM, in article 3csld4F6m22n…@individual.net, "Susan" <Su…@nothankyou.com

wrote: I think it’s helping, but if I get infected again, I’d like to know which abx I can use with the irrigator, instead of systemically?

Many doctors are switching to using the antibiotic via hydro pulse irrigation. You remove the thick mucus to get the abx in better contact with the bacteria too. If your doctor has any questions he can contact me directly.

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On 4/22/05 6:06 AM, in article 3csb6cF6kvuh…@individual.net, "Susan" – Hide quoted text — Show quoted text -<Su…@nothankyou.com

wrote: x-no-archive: yes Murray Grossan wrote: We regularly combine Astelin with a Steroid spray. Are you using Pulsatile irrigation? Thanks for the info, Murray.  Yes, I’m irrigating at least daily, using some SinoFresh now and then in the evening, now that tree pollen is out. I’m about to finish the Augmentin XR, and I still have only a very small, almost pea sized area of soreness in the inner corner of my browbone (it extended almost the length of my eye when I began abx). I don’t want to have to medicate again, this is the third round this year. I just went back to my old allergist and am finally injecting potent desensitization doses of my serum again; the new allergist was so cautious (as convention dictates) that the shots had no effect at all. I’m hoping that the dramatic relief I get from these shots will knock down the allergy/infection/asthma cycle.  I feel a lot less dizzy and weak today, having skipped Advair last night. What drug would my doctor need to rx if we wanted to try irrigating with an abx instead of using it orally?  The same one? Thanks again, Susan

If you are having a sinus – asthma cycle, the cause may be failure of your nasal cilia to remove biofilm with its bacteria. Ask your doctor if using pulsatile irrigation would be of benefit for you.

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On 4/21/05 7:21 AM, in article 3cpr7cF6nht7…@individual.net, "Susan" – Hide quoted text — Show quoted text -<Su…@nothankyou.com

wrote: x-no-archive: yes I have chronic sinusitis that is finally coming under control after a month of Augmentin XR and nasal irrigation daily.  I still have pn drip, though, and plenty of clear mucus. The reason I’ve become  very concerned is that this is now triggering asthma, something I’ve not suffered from in the past. I gave up steroid sprays years ago, thinking they might contribute to infections by immune suppression, but I have adverse reactions to Singulair, and maybe Advair, too (elevated bp). Does anyone here know if it’s safe and/or advisable to combine Astelin with occasional steroid nasal spray?  I’ve always gotten excellent results from the Astelin, so I’m not about to give it up. Susan

We regularly combine Astelin with a Steroid spray. Are you using Pulsatile irrigation?

Response:

"Susan" <Su…@nothankyou.com

wrote in message

news:3cpr7cF6nht7qU1@individual.net…

x-no-archive: yes

(snip)

Does anyone here know if it’s safe and/or advisable to combine Astelin with occasional steroid nasal spray?  I’ve always gotten excellent results from the Astelin, so I’m not about to give it up. Susan

I’m not sure what benefit occasional steroid spray use would be, since steroid sprays take at least 3 repeated days of use to have any significant effect at all, and to truly work well, you would need to use them at least 1 squirt per side every day. btw- I use Flonase every day and Astelin almost every day – with no apparent negative effects.   AW

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Question:

I am using Azmacort and Serevent regularly and Maxair occasionally.  I have recently developed twitches in my eyelids that are quite annoying.  I have also been having headaches.   Does anyone know whether these are side effects of any of these prescriptions?  The pharmacist and physician both say "no." I don’t care if your name IS Erle Stanley, get your rake out of my petunias!

     I get similar symptoms when I have a sinus infection Patricia

Response:

Drugs such as serevent and maxair (beta agonists) can cause muscle twitching.  I have had several patients that had to stop the use of serevent due to severe tremors.  Do not stop your medication with out talking to your physician.

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– Hide quoted text — Show quoted text -I am using Azmacort and Serevent regularly and Maxair occasionally.  I have recently developed twitches in my eyelids that are quite annoying.  I have also been having headaches.   Does anyone know whether these are side effects of any of these prescriptions?  The pharmacist and physician both say "no." I don’t care if your name IS Erle Stanley, get your rake out of my petunias!     I get similar symptoms when I have a sinus infection Patricia

I just started getting eyelid twitches and am on the same meds. and here my husband thought I was winking at him!!!! Seriously, does anyone else have the same problems??? Peace, Tish are the thoughts,you have hidden in your heart…….

Response:

I am using Azmacort and Serevent regularly and Maxair occasionally.  I have recently developed twitches in my eyelids that are quite annoying.  I have also been having headaches.   Does anyone know whether these are side effects of any of these prescriptions?  The pharmacist and physician both say "no."

Take magnesium supplements for the twitches. Say 400 mg. Take before bedtime and it also will help you sleep sounder (helps the natural melatonin work). For the headaches try a gluten-free or corn-free diet. Don.

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- Hide quoted text — Show quoted text – I am using Azmacort and Serevent regularly and Maxair occasionally.  I have recently developed twitches in my eyelids that are quite annoying.  I have also been having headaches.   Does anyone know whether these are side effects of any of these prescriptions?  The pharmacist and physician both say "no." Any bronchodilator can cause twitching of any nerves, that have a tendancy to twitch. I have a familiar tremor in my hands. When I take alot of ventolin (and in the old days theophyline), my tremors would start up. These were the times one or both of my eyelids would twitch like crazy. —

Have you tried taking minerals, especially potassium?  I’ve found them to be helpful.

Response:

I am using Azmacort and Serevent regularly and Maxair occasionally.  I have recently developed twitches in my eyelids that are quite annoying.  I have also been having headaches.   Does anyone know whether these are side effects of any of these prescriptions?  The pharmacist and physician both say "no." I don’t care if your name IS Erle Stanley, get your rake out of my petunias!

Response:

I am using Azmacort and Serevent regularly and Maxair occasionally.  I have recently developed twitches in my eyelids that are quite annoying.  I have also been having headaches.   Does anyone know whether these are side effects of any of these prescriptions?  The pharmacist and physician both say "no."

Any bronchodilator can cause twitching of any nerves, that have a tendancy to twitch. I have a familiar tremor in my hands. When I take alot of ventolin (and in the old days theophyline), my tremors would start up. These were the times one or both of my eyelids would twitch like crazy. —

Response:

: I am using Azmacort and Serevent regularly and Maxair occasionally.  I : have recently developed twitches in my eyelids that are quite : annoying.  I have also been having headaches.   Does anyone know : whether these are side effects of any of these prescriptions?  The : pharmacist and physician both say "no." I don’t take the precise same medications you do (I’m on Pulmicort and Bricanyl), but although the corticorsteroid (Pulmicort) doesn’t have any recognizable side-effects other than those caused by the turbuhaler, the Bricanyl bronchodilator causes a noticeable hand tremblor and a few twitches that sound similar to yours.  Especially for the first hour or two after I have to hit the bronchodilator. : I don’t care if your name IS Erle Stanley, : get your rake out of my petunias! — Murray Stone, Barrister & Solicitor phone:  (403) 486-5146  fax:  (403) 483-7791 snailmail:  616-21, 10405 Jasper Avenue Edmonton, AB, T5J 3S2 Canada

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Question:

Does anyone know of a good med or combination of meds for social anxiety and depression.  I was on paxil for 6 months and gained 50 lbs and felt like I was on sleeping pills.  It worked great except for the unbearable side effects. Zoloft made me aggressive and mean.  Serzone made me confused and not able to think straight at work.  I’m on wellbutrin now with ativan, but the wellbutrin makes me too anxious.  Anyone have any suggestions that have worked for them? The main things is that I cannot gain any more weight!

Response:

Perhaps try adding in a little Celexa to what you’re already on?   I haven’t used it, but from what I hear, once you get used to it, it seems to be the most side effect free SSRI, and many report weight management okay with it.  –Frel. – Hide quoted text — Show quoted text -Does anyone know of a good med or combination of meds for social anxiety and depression.

Response:

Does anyone know of a good med or combination of meds for social anxiety and depression.  I was on paxil for 6 months and gained 50 lbs and felt like I was on sleeping pills.  It worked great except for the unbearable side effects. Zoloft made me aggressive and mean.  Serzone made me confused and not able to think straight at work.  I’m on wellbutrin now with ativan, but the wellbutrin makes me too anxious.  Anyone have any suggestions that have worked for them? The main things is that I cannot gain any more weight!

Dear Babydoll, It is almost impossible for anyone to "know" what med or med combo will work for you without the side-effects you are trying so hard to avoid. That is the unfortunate part of meds, you just don`t know what will work unless you go on them, it is all trial and error. There is one thing that is quite effective for Social anxiety and it has no side-effects , and that is cognitive behavioral therapy. Take care Jackie ~*~I am the master in my fate; I am the captain of my soul~*~

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Question:

I have crohn’s and I have been taking propranolol for essential tremor for 3 years now.  I have not noticed any side effects. I assume by your phrase "the opposite of the usual" that you mean constipation as opposed to diarreha.  I have always been constipated so maybe that’s why I don’t notice it. Before you buy.

Response:

Hello, Is anyone taking this besides me? I take it for essential tremors and for the first time in over 20 years my hand writing is readable. There are some side effects with my crohns which are just the opposite of the normal side effects. Thanks, Ricko in KY

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I take it sometimes before performances and have never had any problems. – Hide quoted text — Show quoted text – Hello, Is anyone taking this besides me? I take it for essential tremors and for the first time in over 20 years my hand writing is readable. There are some side effects with my crohns which are just the opposite of the normal side effects. Thanks, Ricko in KY I used to take it, but stopped when my intestinal disease became unbearable. Too many pills to take, sick anyway, don’t need anymore pills. —- stevenscott

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Question:

Does anyone have any experience with imipramine? 1)  What are the side effects?  Does it cause impotence the way practically all other anti-depressants do?   2)  How effective is it in treating depression? 3)  How different is it from other common drugs such as prozac, effexor, etc.? 4)  Does it have any lethal potential (will it kill a person if they OD on it in large doses)?  Many years ago, I made an unsucessful suicide attempt, and I dont want the temptation to be there if I ever get to that state again. 5)  Is does it have any addictive potential, like some meds can (i.e. you need more and more of it to get the same effect)? I presume in a group like this, many of you are currently on (or have been on) imiprimine.  I just need to get as much info as possible on, since this one of the drugs my doc has mentioned as a possibility for me.  Of course, ive asked him these questions also, but I just want to get another perspective. I’d appreciate any input from anyone out there– thanks advance allegro

Response:

Does anyone have any experience with imipramine?

Not I. Tofranil, haven’t tried it. 1)  What are the side effects?  Does it cause impotence the way practically all other anti-depressants do?  

http://www.mentalhealth.com/drug/p30-t03.html 2)  How effective is it in treating depression?

About as good as any. Actually, it’s frequently used in comparison studies. 3)  How different is it from other common drugs such as prozac, effexor, etc.?

It’s a tricyclic, kind of like a shotgun. Does a lot of stuff, that’s why the scary side effects. Meds like Prozac do less in the body and so have fewer and less frequently occurring (within a population) side effects. 4)  Does it have any lethal potential (will it kill a person if they OD on it in large doses)?  Many years ago, I made an unsucessful suicide attempt, and I dont want the temptation to be there if I ever get to that state again.

Maybe you should ask for an SSRI. All tricyclics are a little dangerous. 5)  Is does it have any addictive potential, like some meds can (i.e. you need more and more of it to get the same effect)?

None at all. If you click on the Research link at Internet Mental Health you can get a ton of abstracts. Researchers seem to like using imipramine.

Response:

I recently started taking Imipramine.  I’m up to 150Mg/day.  I’ve been on virtually all of the newer anti-depressants, so this is kind of my last hope. I can tell you this much, the newer ADs are no more effective than the older ones, such as the Tricyclics and MAOIs. As far as side effects go, I’m experiencing dry mouth and constipation.  Imipramine seems no worse than ADs like Prozac, Paxil, Serzone, Effexor, etc.  In fact, some of these newer ADs had more side effects.  Paxil, in particular, was the hardest drug to get off of.  Even though I weened off of it slowly, I experienced painful withdrawals, such as migraines, that lasted well over a month. From what I’ve read, one can OD on Imipramine, but so can one on Aspirin.  Also, it’s not addictive. I say it’s worth a try.  I mean, these newer ADs are being marketed heavily (whereas Imipramine is generic and inexpensive) and this is influencing doctors and patients.  But again, I have yet to read any studies that show Imipramine to be less effective. Does anyone have any experience with imipramine? 1)  What are the side effects?  Does it cause impotence the way practically all other anti-depressants do? 2)  How effective is it in treating depression? 3)  How different is it from other common drugs such as prozac, effexor, etc.? 4)  Does it have any lethal potential (will it kill a person if they OD on it in large doses)?  Many years ago, I made an unsucessful

suicide attempt, and I – Hide quoted text — Show quoted text – dont want the temptation to be there if I ever get to that state again. 5)  Is does it have any addictive potential, like some meds can (i.e. you need more and more of it to get the same effect)? I presume in a group like this, many of you are currently on (or have been on) imiprimine.  I just need to get as much info as possible on, since this one of the drugs my doc has mentioned as a possibility for me.  Of course, ive asked him these questions also, but I just want to get another perspective. I’d appreciate any input from anyone out there– thanks advance allegro

Before you buy.

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Question:

I hope someone will soon, Glenn. If you know what I mean. <Hubba,Hubba Gloria

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I only lost 3 pounds last week but the total for two weeks is 11 pounds. It’s still reasonable to lose 50 pounds by my birthday Nov. 28th. Some of the weight I didn’t lose became lean,toned muscle and I’m still detoxing from the med.s which makes it slow going. I had to make a minor call Saturday to Dr.Tom but the no med.s thing is going well. The future’s so bright I have to wear shades. :^) Gloria Thanks for the support!!

Gotta love this girl… — "I do not know" – GlennT Learning to let go… http://people.A2000.nl/gthomas/GlennHome.htm

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Hey girlfriend!! Just under two months until my move to Athens Ga. Life is good! I hope you’re doing well too. G

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Thanks Mary Beth!! It’s good to have your support. G

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Thank you Aware1!! G

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I found a cabbage soup/veggies/fruit diet that I really enjoy. On the fifth and sixth day you can eat up to 20 oz. of steak!! :^) YUM! I’m also off med.s, to make a long story short I may have been sicker on them than I am off. Beside a side-effect of Zoloft for me was midnight eatting binges and Zyprexa helped me gain 80 pounds. I feel great and have had only a few withdrawl events. Week three of the diet and a little over three weeks off Zyprexa. I’ve been off Zoloft for a week and a half and normal sleep cycles are back!! Life is good when I let it be. :^) Gloria

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What is your diet plan?  I know, I know, I’m behind, and probably missed you explaining it all in a previous post. –Tez (fat, and I don’t mean phat) – Hide quoted text — Show quoted text -I only lost 3 pounds last week but the total for two weeks is 11 pounds. It’s still reasonable to lose 50 pounds by my birthday Nov. 28th. Some of the weight I didn’t lose became lean,toned muscle and I’m still detoxing from the med.s which makes it slow going. I had to make a minor call Saturday to Dr.Tom but the no med.s thing is going well. The future’s so bright I have to wear shades. :^) Gloria Thanks for the support!!

Response:

I only lost 3 pounds last week but the total for two weeks is 11 pounds.

Hey, this is great! Congrats on your weight loss! Mary Beth

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Heyhi! Congratulations! Lean, mean, UGA-bound machine chica, eh? -Amber

– Hide quoted text — Show quoted text -I only lost 3 pounds last week but the total for two weeks is 11 pounds. It’s still reasonable to lose 50 pounds by my birthday Nov. 28th. Some of the weight I didn’t lose became lean,toned muscle and I’m still detoxing from the med.s which makes it slow going. I had to make a minor call Saturday to Dr.Tom but the no med.s thing is going well. The future’s so bright I have to wear shades. :^) Gloria Thanks for the support!!

Response:

I only lost 3 pounds last week but the total for two weeks is 11 pounds. It’s still reasonable to lose 50 pounds by my birthday Nov. 28th. Some of the weight I didn’t lose became lean,toned muscle and I’m still detoxing from the med.s which makes it slow going. I had to make a minor call Saturday to Dr.Tom but the no med.s thing is going well. The future’s so bright I have to wear shades. :^) Gloria Thanks for the support!!

Response:

Question:

It’s my understanding that Kip had secretly stopped taking his meds, as had Eric Harris. I’d like to know why his (Eric’s) psychiatrist doesn’t speak up.

To his credit, that doctor is honoring his obligation to his patient. Doctors need the patient’s permission to disclose confidential medical records. – Hide quoted text — Show quoted text – Kate Coe  drug, which is classified by the U.S. government in the same category as  cocaine and heroin. Oopsie!  Another little error: cocaine and heroin are not in the same "category."  Sounds scary, though, doesn’t it?       Nod.  Specifically, Ritalin is Schedule II, believed to be at a high risk of diversion, but having medical necessity.  Codeine is also schedule II.  Heroin, marijuana, PCP, etc. are schedule I, no legitimate medical use recognized by the Feds, but research use is allowable.  Clarke claims that children who take Ritalin in elementary school are  often switched to Prozac and other drugs as they grow older. The effects  of Ritalin can cause problems long after the prescription is stopped, he  added.       This is a particularly good example of lying, BTW.  It’s true that some people who take Ritalin have latent Tourette’s syndrome uncovered.  They may have problems with tics for a long time. However, Ritalin is not causing the tics; Tourette’s is.       He gets to make a statement that is subtlely untrue, while being able to point to someone who had a long term problem with Tourette’s as "proof".  "When they go through puberty, this becomes true speed," explained  Clarke.        BTW: the idea of a "paradoxical effect" of stimulants has been debunked for a long time. As for "speed", have you ever let your child have some Pepsi?  Caffeine is as much "speed" as Ritalin is.  "They are switching lots of these kids from Ritalin to Prozac — the  frying pan into the fire routine," she told WorldNetDaily. "Kip Kinkel  in the Oregon shooting last summer was a perfect example of the effects.  The chances the boy in Arkansas was on it are great." Interesting statement, isn’t it?  "The chances…are great."      It also shows an incredible ignorance of probability.  The chances aren’t great; the chances are 0 (he wasn’t on it) or 1 (he was on it).  There is no "chance" involved in an already established event.  Of course, the honest statement "I wouldn’t be surprised if he was on it" makes the person look like a prejudiced jerk.       I’ll refrain from the obvious cheap shot. — Everything I needed to know in life I learned in kindergarten.  Like: There is great power in both creation and destruction, but creation focuses power, and destruction disperses it.  This is the superiority of creation.

– Mark Probert I reserve the right to post any email, at my discretion, into the newsgroup from where it originated. If you "post & mail" please state

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- Hide quoted text — Show quoted text – I think it’s disgusting that anyone would use such a tragedy to push a political agenda. –John Yes.  I think that this guy wants to get his picture in the dictionary next to the definition of ‘opportunist’ Visit his website. Visit his website. Visit his website. Visit his website. Oh, please visit his website.  

Here is the URL as a single line: http://www.worldnetdaily.com/bluesky_bresnahan/19990429_xex_doping_ou… Thanks, now I’ll be able to put in a garden.   – Hide quoted text — Show quoted text – I was kindly forwarded the following little gem this morning by someone.   I am not posting it here because I agree with any of the views contained and I didn’t write the piece (for any daft individual who thinks or says I have  - John) but what are everyone’s views on this news item? the article is at http://www.worldnetdaily.com/bluesky_bresnahan/19990429_xex_doping_ou… ml Doping our kids   Prescription drugs at root   of violence, says expert   By David M. Bresnahan  

Question:

hello all….I have receantly been diagnosed with PD… this is a scary thing!!!!!!!     I have been reading this NG for a week or so and seem to relate to many of you. I am studing up on this PD thing and "trying to stay vertical" I am on Zoloft and Xanax as needed. Just saying "Hello I have a problem" is enough to flip me out! Be gentle with me K? J

No problem J. Welcome to ASAP. Most of us are here because we have the same problem you do. It’s really difficult inthe beginning,but it does get better. Curious, do you have depression to? If not, why the Zoloft? Xanax works great for panic without any additional meds. And, with lots less )or no) side effects. Just something you might want to talk to your doc about. Your best bet is to talk topeople who are positive and supportive here. Ignore the flames and trolls. They come and go. Don’t let them get to you. Get the weekly FAQ and also visit lots of the great web sites that are out there. Like Arthur Anderon’s website! It’s one of the best. Educating yourself about this disorder is one of the best things you can do! Feel free to e-mail me if you’d like. Regards, Jen

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hello all….I have receantly been diagnosed with PD… this is a scary thing!!!!!!!     I have been reading this NG for a week or so and seem to relate to many of you. I am studing up on this PD thing and "trying to stay vertical" I am on Zoloft and Xanax as needed. Just saying "Hello I have a problem" is enough to flip me out! Be gentle with me K? J

Response:

HI J!!! Sorry to hear you have become "One of us", but glad you found this NG all the same! Jen really said it best as far as educating yourself about panic/anxiety… The best thing you could do, at least for me anyway, is to read as much as you can. I found what was the scariest of all was the not knowing, the lack of understanding as to what was exactly a panic attack meant, what the terms were, etc. Once I understood what was taking place during an attack, I was able to then try and find ways to cope with them. Of course, I am still searching for ways, but…. I am on the Zoloft also… How are you doing with that? I bet at times you may feel a little lost…Dont get down! You will survive! Oh, and for what its worth.. Know the best thing about panic sufferers? They are probably the most understanding, caring, compassionate folk you will ever come across… What you were seeing, like Jen said, is the trouble makers…. Wishing you the best!! — Miriam     (These opinions are mine and mine alone… YMMV) Energizer bunny arrested, charged with battery. – Hide quoted text — Show quoted text – hello all….I have receantly been diagnosed with PD… this is a scary thing!!!!!!!     I have been reading this NG for a week or so and seem to relate to many of you. I am studing up on this PD thing and "trying to stay vertical" I am on Zoloft and Xanax as needed. Just saying "Hello I have a problem" is enough to flip me out! Be gentle with me K? J

Response:

hello all….I have receantly been diagnosed with PD… this is a scary thing!!!!!!!     I have been reading this NG for a week or so and seem to relate to many of you. I am studing up on this PD thing and "trying to stay vertical" I am on Zoloft and Xanax as needed. Just saying "Hello I have a problem" is enough to flip me out! Be gentle with me K?

Hi, J – welcome to ASAP Glad to hear that you’re getting proper treatment and I hope you find this NG the valuable resource that so many of us have. — Gary Cooper

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JSmittie schreef: hello all….I have receantly been diagnosed with PD… this is a scary thing!!!!!!!     I have been reading this NG for a week or so and seem to relate to many of you. I am studing up on this PD thing and "trying to stay vertical" I am on Zoloft and Xanax as needed. Just saying "Hello I have a problem" is enough to flip me out! Be gentle with me K? J

Hi J! Don’t worry. You’ll find much knowledge and support here. It’s a shame that new people should have to worry about posting here these days. The only reason why anybody will not be gentle with someone else here is when this someone else is consciously posting desinformation or writing insulting posts just to disrupt the newsgroup. These people are called *trolls* in Internet lingo and they’re to be found in every newsgroup on Usenet. Don’t worry about them. How long have you been on Zoloft? Does it work for you? It’s often a good idea to take a benzo like Xanax in at least the initial stages of a AD like Zoloft, to let your body adjust itself to it. Hope that you will post more often! Philip

Response:

Hi there!  I’ve only been here a little over 2 months, but some of the folks have been here literally for years.  So, there’s quite a lot of accumulated wisdom that has been of great help to me. I’m glad to have you here, "fellow newbie".  Just ignore the flame threads, delete the whole thread if it bothers you.  You’ll do fine. E. Brent Price

– Hide quoted text — Show quoted text -hello all….I have receantly been diagnosed with PD… this is a scary thing!!!!!!!     I have been reading this NG for a week or so and seem to relate to many of you. I am studing up on this PD thing and "trying to stay vertical" I am on Zoloft and Xanax as needed. Just saying "Hello I have a problem" is enough to flip me out! Be gentle with me K? J

Response:

Hi J, I think the more you find out about PD the less you will be afraid…now you have a name for what you have been feeling, when I was diagnosed this summer and had the "names" spelled out for me, I felt a little "nuts", but now I DON’T feel that way. This isn’t some "head thing". For me trying to cope with it on my own was barely tolerable and now I am on the way to developing more appropriate methods of dealing with it. Keep reading and coming to this ng, there’s a lot of good info and support to be found here. Michelle says… – Hide quoted text — Show quoted text -hello all….I have receantly been diagnosed with PD… this is a scary thing!!!!!!!     I have been reading this NG for a week or so and seem to relate to many of you. I am studing up on this PD thing and "trying to stay vertical" I am on Zoloft and Xanax as needed. Just saying "Hello I have a problem" is enough to flip me out! Be gentle with me K? J

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All of you seem to have such encourement for those afflicted with this condition.  I know I have felt a lot of support reading the postings.  My husband is going through a very difficult time at the moment.  We have had 2 very emotional days, and usually this is a very strong man.  A month ago he had a heart attack and had angioplasty.  Not that the spasmodic torticollis isn’t bad enough, now he is worried about his heart also even though the cardiologist says there is no relation (I certainly question that with all the stress he has been under for the past 18 months).  He seems to be giving up telling me he can’t fight this thing anymore.  He take Baclofen and Artane and of course gets Botox every three months.  The Botox has not taken the pain away but it has allowed his head to remain in an upright position.  He suffers every waking moment with spasms and we have yet to find the right combination to relieve the pain.  Do any of you have any words of encouragement I can pass on to him.  Some of you have suffered with this for many, many years and seem to have found a way to deal with it even through you are in pain and my heart expecially goes out to the children who have to suffer with this.  Would love to hear from you and I will print the messages out and read to him as he cannot sit at the computer.  BethThanks to all of you. Virginia

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writes: He seems to be giving up telling me he can’t fight this thing anymore.  He take Baclofen and Artane and of course gets Botox every three months. The Botox has not taken the pain away but it has allowed his head to remain in an upright position.  He suffers every waking moment with spasms and we have yet to find the right combination to relieve the pain.  Do any of you have any words of encouragement I can pass on to him.  Some of you have suffered with this for many, many years and seem to have found a way to deal with it even through you are in pain and my heart expecially goes out to the children who have to suffer with this.  

I wish I could think of the right thing to say…its so hard.  I feel so bad for what you and your husband are going through.  Cant they admit him for awhile, like they did Jeremy, break the cycle and try other meds until something works?  I know what you must be going through, its so hard to watch someone you love suffer and feel so helpless.  My son has suffered for his whole 13 years of life and he often asked why I kept trying so hard to find a diagnosis and remedy….he had adjusted to it as a part of his life.  (Children adjust so much better than us adults!)  I told him that I would never give up and he was finally diagnosed about 7 months ago…..after 13 years of mis-diagnosis.  He is going through all the trials of medication and I think we have hit on a good combo now, but who knows how long it will last.   He encourages me more than I do him!  He always says *it will pass, dont worry, I’m fine*….as I bite off all my fingernails.   Since I dont know what to say….I asked for Jeremys input.  He found it hard to come up with something concrete except to say that he will pray for him, not to give up….that there is a light at the end of the tunnel sometimes, if God thought it was his time to go….he would, that he will get his reward in heaven for the suffering he has done on earth (I taught him that years ago….hes hoping heaven has alot of Super Nintendo games…you know kids) and that he has a family that loves him very much. I wish I could do better than this, but I am new at the dystonia diagnosis so I dont know exactly what can be done to find the relief he needs.  I am sure that  the more expercienced people on this newsgroup will have much better responses for you.  I just wanted you and your husband to know that we are praying for you and wishing you better days. Love, Cyndie and Jeremy

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writes: This may be a start in bombarding the networks.  

Lets do it!  And thanks for the info! Cyndie

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I finally found some addresses which I will pass along to all of you. NBC is Http://TVnet.com/tv/NYtv/wNBC.html – FAX 212-456-2290 CBS fax is, 212-975-5656 (did not locate an email address) I found a Donahue but not sure if this is Phil, it was just listed by last start in bombarding the networks.  

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Mary Beth you are wonderful!  You speak from your heart and since you have dealt with this condition for such a long time you can understand what he is going through.  I have mentioned you to Doug several times especially reinterating how long you have suffered with this, have raised a family, and, have such a terrific outlook on life.  This is a terrifying time for both of us, I try to give support and guess I am too much of an optimist. I always feel today isn’t so good, but tomorrow will be better.  Thank you for mentioning the depression after surgery, this may be what is hitting him now.  We have been the "I think I’m going crazy" route but that was due to medication which has now been corrected and he is back to normal. We do have to be careful what is prescribed because he takes so many other meds for his dystonia and the 2 doctors are not in the same group, or same city so I am the intermediary trying to make sure he is not taking drugs that will contridict each other.  I will speak with him regarding the possibility of a phone conversation I know if he could sit at this computer and read the messages posted he would find much support from all.  Thanks again for your concern, support, and very good advice. Fondly, Virginia

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- Hide quoted text — Show quoted text – Mary Beth you are wonderful!  You speak from your heart and since you have dealt with this condition for such a long time you can understand what he is going through.  I have mentioned you to Doug several times especially reinterating how long you have suffered with this, have raised a family, and, have such a terrific outlook on life.  This is a terrifying time for both of us, I try to give support and guess I am too much of an optimist. I always feel today isn’t so good, but tomorrow will be better.  Thank you for mentioning the depression after surgery, this may be what is hitting him now.  We have been the "I think I’m going crazy" route but that was due to medication which has now been corrected and he is back to normal. We do have to be careful what is prescribed because he takes so many other meds for his dystonia and the 2 doctors are not in the same group, or same city so I am the intermediary trying to make sure he is not taking drugs that will contridict each other.  I will speak with him regarding the possibility of a phone conversation I know if he could sit at this computer and read the messages posted he would find much support from all. Thanks again for your concern, support, and very good advice. Fondly, Virginia

Hi Virginia: I have ST with accompanying essential tremor, I also have panic disorder which causes depression at times for me.  Panic disorder can do a really good job of convincing you that you must be going crazy.  Tell Doug that it’s only the brightest, most brilliant minds that suffer from this kind of depression…….look at me!  <VBG  Having surgery can really knock you down hard, especially if you have other medical conditions that have to be treated properly at the same time.  I hope Doug is well on the way to recovery.  The depression will go, that I know.  No way is he going crazy.  There *will* be a cure for dystonia very soon – I’m convinced of that.  Give him a big hug from me and tell him I’m thinking of  both of you. All the best. Mally  

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Cyndie and Jeremy, Your touching note brought tears to my eyes and I want to thank you for your prayers.  I have pursued this horrible affliction much the same as you but of course not nearly as long.  I have searched for the very best medical Dr.s available and in the beginning, we he wasn’t as bad and was much stronger we would have gone anywhere to get the proper treatment, at least one that would give him relief.  We were lucky in a sense that the first neurologist we saw was familiar with dystonia and put him in touch with a doctor that was a researcher in the field and gave the botox injections.  He has not had any trouble with the blepharospasms after having 4 treatments which was back in October of 1994.  We were so hoping that the Botox would have the same affect on the torticollis, but so far it hasn’t, but we will keep trying.  We live in the Los Angeles area and there are many very fine centers and wonderful doctors here and believe me we have tried them all.  We have even been to the Mayo Clinic in Scottsdale, AZ.  All the doctors we have seen are knowledgable, but they need to come up with the right combination of meds.  My very best to you and many, many kudos to your valiant son. Virginia

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