DancingLight

I have struggled with feeling ill and feeling discomfort when there is pressure against that area of my head as well.

I have been checked for Chiari, stenosis, etc. All clear.

I DID test positive for Thoracic Outlet Syndrome and the PT for this has resolved a great deal of these issues. My PT uses Dr. Peter Rowe's techniques to relieve neural tensions. 

I also get massage, take Lyrica, LDN, put essential oils and Deep Blue Rub on the back of my neck.

This issue has been consistent for me throughout my 20 years of illness, and when I am trying to rest and want to lie down it can be very difficult to relax because of teh discomfort, the throbbing, etc.

Emily

I just ordered some Banana Bag to try!

I have been using Tri-Oral for some time as well, but the flavor is pretty bad! So, you either need to add juice or stevia/lemon juice/lime juice, etc.

My doctor just prescribed CBD oil to help with sweating and possibly pain. I haven't started it yet. We also tried Marinol many years ago, but it made me SO dizzy!

Hi Jan! Thanks for your reply!

If my memory serves, you were a member many years ago when I was on the board a lot?

I got a Schwinn as well! The Schwinn 270. 

I did a bunch of research and this bike seemed to offer the most bang for the buck.

Emily

Hello All!

I spent more than a decade on DINET, but haven't been on for several years now! I'm back! Haha!

I'm here asking if anyone has a type of recumbent bike (brand, seat style, etc.) that you would recommend.

I did a search to see if there was already a thread on this, but only saw that many of you use recumbent bikes, but did not see a mention of what kind or where you got yours!

Thanks SO much!

Emily

Thank you Rachel!

I kept getting the R, and then got Richland and then...well, just wasn't sure!

I Googled it today and it appears that it no longer exists as I couldn't get any hits for it or the Snowflake Foundation.

xoxo to you and Corina!

Emily

Many years ago we had a member (a she may still be a member, as I have not been online much), who bred companion dogs.

She had POTS and her family bred Newfoundlands and Boxers for companion animals.

I cannot find the name of their farm or remember her name/username.

Are there any 'oldies' online who might remember who I am talking about and be able to steer me in the right direction?

THANK YOU!

Emily

I'm in shock!!! And soooo excited! Is this too good to be true????

I tuned into the webinar live and it was extremely well-done. It is great for anyone...those newly diagnosed and those needing a refresher course. It is a chance to get some great information from one of the best specialists in the world.

Thank you Nina!

I just got this information and link from the CFIDS Association and thought it was helpful too, as it lets us know what the medical community is saying/doing.

The Heart Rhythm Society has written to FDA about the hardship that removing midodrine from the market will cause to individuals with OI. You can read their letter at http://www.hrsonline.org/Policy/DevicesDrugsFDA/Drugs/FDA_Midodrine.cfm . We will be posting an alert on our Grassroots Action Center with a template letter to FDA on this topic. You will be notified about the opportunity to add your voice to others.

I agree....we really made a huge effort when it comes to this! Thanks for all of your work!

Thank you Wareagle for the update!

I was wondering if anyone had any ideas as to whether or not it is helpful to contact the manufacturers (Shire OR the generics)? I have yet to do that and friends have asked about that option.

Thank you!

Oh, that DYNA Kids link is fantastic! Thank you!

And thanks for the direction on what to tell people to do. My friends have been very generous in their efforts to call the FDA or email...so it is good to know that works!

I am working on my letters and also working on 'directing' friends and family as to how to speak up. The squeaky wheel gets the grease, right?

I got the automated reply from the FDA to my email, and noticed they had made a couple of changes to the letter. They are below. They have added in yet ANOTHER contact address.

I am confused about what the best way is to make our voices heard. Is it to have people call, email the FDA, email the doctors, mail letters to the two doctors listed in earlier posts, OR send a letter to the address below. I realize that maybe some of us here on the board will do all of them, but I was wondering if anyone knew the best routes to direct friends and family. I think they would be willing to do ONE of the things.

Anyways, here is the stuff that was added to letter and the new address they sent.

Would love to hear your thoughts, Thanks!

Although we cannot disclose the full regulatory history of this drug, we have exercised some regulatory discretion in retaining ProAmatine and the generics on the U.S. market for this long. Orthostatic hypotension remains an important problem for people who have it and we note that, even now, no FDA-approved alternative treatment exists to treat the condition.

We appreciate your comments regarding the midodrine withdrawal. The Docket number for the FDA proposal is: FDA-2007-N-0475. FDA is monitoring the comments and will be discussing the potential impact of such an action as withdrawal. Written correspondence to FDA may be posted to the public docket (FDA-2007-N-0475).

Send to:

FDA-2007-N-0475

Division of Dockets Management (HFA-305)

Food and Drug Administration

5630 Fishers Lane, Room 1061

Rockville, MD 20852

* Entitle your letter: A Response to the FDA proposed withdrawal of Midodrine

(FDA-2007-N-0475)

* Clearly and efficiently state your concern and ask your questions.

* Be sure to provide your contact information.

* Save a copy for your records.

Thank you for posting Katherine! I loved the story.

Also, the reviews, excerpts, and description on BN were really interesting...

http://search.barnesandnoble.com/books/product.aspx?r=1&EAN=9781565126060&cm_em=rxs20@psu.edu&cm_mmc=Other-_-Other-_-100827_BN01_BNREVIEW-_-thesoundof

Nina,

Your letter is FANTASTIC. How would you/do you feel about me or others using parts of it? I am trying to get letters together from my perspective, and also a template together for friends and family to send. I don't want to use parts of your text without you feeling completely comfortable with it being used by me and others.

Thanks to everyone who is fighting this.

I'm trying not to panic!

Emily

I sent the following letter to the FDA today:

I strongly urge you to reconsider your withdrawal of ProAmatine (midodrine hydrochloride) from the market. While I understand that the FDA has an obligation to enforce its rules and regulations, the decision to withdrawal ProAmatine from the market completely fails to take into account the hundreds of thousands of people who will be left suffering with debilitating symptoms of Orthostatic Intolerance. I am one of those people. Midodrine has significantly improved my quality of life. Over the past 12 years, I have tried over 70 medications to treat my various health conditions which include Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH). None have been as effective OR free of side-effects as midodrine. While you are recommending that patients talk to their health-care providers regarding alternative treatments, you are keenly aware that ProAmatine is the ONLY FDA approved drug to treat Orthostatic Intolerance and there are NO reasonable substitutes for it. In addition, you have chosen to withdraw a medication that has NEVER been called out for any safety issues since it was first approved in 1996. You have made it completely cost-prohibitive for any of the manufacturers of midodrine to benefit from doing the follow-up studies you are requiring, and hence keeping the medication on the market. If the FDA is truly doing what is right for those who take the medications you approve and monitor, you will take into consideration the fact that lives like mine will be completely devastated by the withdrawal of ProAmatine. You will find a solution that allows ALL involved to benefit--the FDA, the manufacturers, and the patients who count on ProAmatine to help them work, care for children, and engage in normal activities of daily living.

I wanted to add a personal story about how the medication has helped me. I can't wait to get my response! Haha!

Thank you to everyone who has already written to the FDA and their representatives! That is definitely my project for this week.

I was fortunate enough to be in contact this week with my ANS doctor and he suggested that the best thing we can do at this time is make ourselves heard by contacting the FDA and our representatives.

Otherwise, I don't think the doctors know too much else either. He said midodrine may still be available on a case by case basis.

Make sure the FDA and your representatives know this was a political decision, and did not take into account patients.

I know Nina was also waiting to hear from doctors on her board, and may have some more information than I do.

I haven't been on the board for a long time, and I hope that I am not stepping on any toes to post this. Just wanted to share what I had heard, because I know a lot of us feel that our lives and the quality of them depend on this medication.

The best thing we can do right now is speak up!

emily

Were our doctors even aware of the impending withdrawal of midodrine before the announcement by the FDA this week?

I was just curious if they are left scrambling as much as we all are? I had just spoken to my ANS specialist last week about my midodrine Rx and he didn't mention anything about it possibly being taken off of the market. He's one of the top specialists in the country, so either he didn't know or he was trying not to cause me panic before everything shook down.

The news hits for ProAmatine and its withdrawal are numerous and not very encouraging!

Please keep us posted if anyone knows what we can do to help keep this drug available. Nina, it sounds like you have inside scoop?

A very, very long time ago there was a discussion about midodrine and its unique properties. Sunfish went into great detail about the drug, and I'm afraid I'm going to get the information wrong, but I'm going to give it a try and maybe someone else can chip in.

I remember her saying that midodrine was the first drug approved for OI, and that it was basically 'part' of ritalin. It was discovered that ritalin raised blood pressure and this was helpful a negative side effect for those with ADD, but not for OI. So, midodrine was developed from ritalin, without all of the side effects of agitation, etc.

Some folks are able to tolerate stimulants like ritalin and do well with them. I did not. But, they have the bonus of raising BP.

I hope I sort of got this right...

emily

This is devastating news for those of us who rely on this medication.

Nina, that is excellent advice and I am sure that our doctors are just as frantic as we are to find a solution!

I hope that something will be worked out...as I know so many of us benefit from this medication.

Ernie,

This is FANTASTIC news!

We want what makes you happy!

I find that if I can get out or be outside instead of on the computer, that is what I do. It's a trade-off, and it's hard, but it's also what we have to do....

Hope you stay enjoying this newfound feeling!

I have not tried tilting my bed yet, but my doc has brought it up several times.

It has to be the ENTIRE body (not using a wedge or pillows) like potsgirl said and it is the HEAD of the bed.

It can also help with not having to get up to pee so much at night as it sort of 'tricks' the kidneys a bit.

I haven't done it b/c I have a tempur-pedic adjustable bed and I'm afraid I will ruin the bed.

I just learned something really interesting at my lasted psychiatrist appt.

He asked me how I monitored/paced myself. I said I wasn't very good at it. It's hard to know when I'm overdoing, etc. and if I'm having a good day, I tend to overdo.

What he said was that it's important to find a way to do what I can on good days and try to find a way to stop before I push TOO far and crash. On bad days, back off.

What I found so interesting was his comparison to people in chronic pain who overdo on a 'good day' and crash with pain for 1-3 days afterwards.

This is pretty much what I do (and a lot of us here do). We push hard and then crash out.

He said that doing this can create fragility. Whereas if we pace ourselves better and don't push to the point of serious crashing we can build endurance.

It was a different perspective for me. And even after 10 years I still over do. I guess this gave me a different reason and motivation to pace myself better.

emily

Sophia...I LOVE GG!!!!!!!