Noreen

where can i get a cuff? and whats a rough price?

There are hundreds on the market. Omron is generally considered a good brand but a lot depends on how you will use it.

A search on Amazon revealed this Portable Panasonic model for $35 with pretty great consumer reviews (I really like to get other users experiences before I make purchasing decisions).

http://www.amazon.com/Panasonic-EW3109W-Upper-Pressure-Monitor/dp/B000NY6JXA/ref=sr_1_5?ie=UTF8&s=hpc&qid=1284229000&sr=1-5

That is pretty much the low price point for a good blood pressure cuff.

Just brainstorming here as you requested so please don't get overly concerned about possibilities mentioned.

Did you get copies of your lab work? Do you bruise easily?

I am wondering about your platelet count and possible thrombocytopenia.

Did they do a full rheumy blood panel? A lot of your symptoms seem indicative of antiphosolipid syndrome. The episodes you describe could be TIAs - they can be self correcting and leave no residue that would be picked up on MRI. You could ask the doctor whether it might be worthwhile to bring in rheumatology since you aren't getting anywhere with answers. Rheumatology should bring in hematology/oncology is there are any issues with your blood work.

Hope you find some answers soon, sweetie.

((hugs)

noreen

Good point! I'm finally going to a dentist with music and movies.

Movies?! What do they do project them on the ceiling - I'd have to get contacts -LOL

I am so glad this topic was posted, because I have been feeling like such a slug.

Now if I think I can wait til tomorrow, I will wait til tomorrow. If this post is not making sense, it is because my brain is not functioning too well at the moment---forgive.

I forgot to mention I still keep buying makeup in the hopes that I will start to use it again regularly even just for myself inside the house or maybe I will get to go out more. I have to keep thinking positively. I also think I need cuter loungewear.

Your post made perfect sense to me. Your life parallels mine.

My only niece got married last month. I was able to go thankfully but in trying to get ready discovered that I had no mascara since I had given it to my son last Halloween. Now that is pathetic - I had not realized it had been that long since I wore makeup!

Passing along info on free on-line courses offered in conjunction with National Invisible Illness Week.

Attend the National Invisible Chronic Illness Awareness Week Conference Workshops from the comfort of your own home. Programs will occur M-F, September 13-17, 10:30am-12 PST; 12:30-2 pm CST; 1:30 pm-3 pm EST. You listen to them live on your computer or can listen later. Listen at InvisibleIllnessConference.com - just turn up your speakers. More Information

http://invisibleillnessweek.com/2010/09/08/conf-workshops/

There are 2 to 3 workshops daily according to the website. while some have a decidedly Christian slant, there are many that could help members here (i.e. life coach for career women with chronic illness, organization and simplify, etc.)

The FDA posted this statement today regarding midodrine:

http://www.fda.gov/Drugs/DrugSafety/ucm225444.htm

That is a very well prepared statement.

In my last letter to the FDA and elected officials, I focused heavily on the cost to the American taxpayer for all the dialysis patients, the patients that would have to go into a nursing home paid for by Medicare and the fact that the gov't was paying for the studies run by the VA.

Of course, it was late and I was mad so I also mentioned that the decision to choose midodrine as the first drug to pull was suspect since the retired director of the FDA Clinical Division is Medical Director for the company putting out the next drug in the pipeline.

I actually think the elected officials listened and communicated with the FDA.

One thing that helps with anxiety at the dentist is distraction from listening to music. Many dentists offer headphones but you could bring your own MP3 loaded with whatever music is soothing or an audiobook if that distraction would work better for you.

Shire does a turn around and instead of pulling out from the Midodrine market, requests a hearing re: Midodrine (ProAmatine).

http://fdanews.com/newsletter/article?issueId=14022&articleId=130084

That's a relief.

It is a bit more official than the NY Times article.

tks

That is GREAT information to keep in mind.

Thanks for thinking things out for us.

This might seem like a simple question, but HOW were you carrying the weight?

If I had 15 pounds in a grocery basket, it would be with both hands held in front, up near my chest, at least that would be my first impulse. Two things come to mind: if that was your position, your pecs might be weak, the other is that it would cause a lot of pressure by those muscles on the chest cavity almost like the valsalva which limits blood flow to the heart to begin ... I try to carry my groceries down on either side with my arms slightly bent and back to open the chest and engage the bicep so that I don't strain my shoulder tendons. I can carry quite a bit of weight that way without discomfort, but a laundry basket is a pain and it is much lighter. I always had a hard time holding the kids in front of me with both arms and ended up with that classic Mommy-one-hip carry (not great for post pregnant hips!)

You have a very tough road. I hope you have some support and are able to see a therapist. Being a 24/7 caregiver while being your child's educator is extremely hard. Aside from support I don't have a lot to offer.

Has your son had a sleep study? A certified pediatric sleep specialist might be able to offer some insights. One thing I noted is that the symptoms are worse in the winter months - adding 1000 iu of vitamin D is probably an idea worth considering along with full spectrum light bulbs in the house in case SAD is contributing to the problems.

With the hypermobility as well as the headache and dysautonomic issues, I am wondering whether it might be a good idea to have him evaluated for Chiari Malformation.

I hope you have a good pediatric doc for your son. It is so painful when our children hurt and we can't make it all better.

{{hugs}}

noreen

{{{Maggie}}}

I hope you've recovered from your shopping trip. You now know to always grab a cart. Leaning on the cart while shopping can help stave off symptoms.

Cut yourself some slack. After all you are busy growing a human at the same time you are doing everything else.

wishing you Sweet dreams and restful slumber,

noreen

Debby-

What did the ER doc dx it as?

I have what the specialists term an unusual presentation of cervical dystonia (aka spasmodic torticullis). I have had one round of botox so far. As long as I stay reclined or in bed a good portion of the day, it is not too bad. If I am upright too long, the spasms will definitely hit and lack of sleep is definitely a contributor. When I was working full time and going to grad school my head would bounce around incredibly during night classes. I really am not sure and don't think the docs are either as to what is going on but I hate being a ceiling inspector.

I hope your daughter's issue was an isolated event. I agree that addressing her sleep problem is a good idea.

noreen

I take Adderal and have Raynaud's.

I haven't noticed any increase in Raynaud's symptoms due to the amphetamine.

Way to go Mack!

I think it is super that he has found what he wants to do and is willing to work for it.

You have every right to be proud.

Hi Noreen,

Just to clarify what i meant with the certification, it's the therapist, usually it falls under PT(physical therapy), who would be certified as a vestibular therapist, not the doctor. Ha, this way your neuro-ophthalmologist doesnt look at you strange if you ask;-) It's possible the doctor may "specialize" or have experience with visual-vestibular disorders, but I'm not aware of a certification for doctors in that area, more of just a sub-specialty due to their interests/experiences.

Also, in regards to the prisms, has your neuro-ophth. identified a cause for your vision symptoms? The cause would obviously affect the treatments used, but I'm learning there are different types of prisms, used for different things. I even had two different kinds I'm experimenting with. One for computer/reading, and one for walking around. With me, I don't have visual acuity issues, I have "good vision", no bluriness, but I have convergence insufficiency and visual processing issues, suppression of eyes, etc.. that cause me to feel more eye symptoms,( fatigue, lightheadedness/dizziness, nausea, headaches, etc) and also effect my depth perception. Apparently the prisms are used with convergence insufficiency, and the neuro-optometrist feels people with vestibular issues benefit, from the prisms getting them to use their peripheral vision more. Oh, and that's the other thing, I found the neuro-optometrist as opposed to ophthalmologist knew more bout vision therapy and prisms. So if you dont feel you're getting anywhere with your current doctor. maybe look into the other specialty.

Lastly, if your dr does try prisms with you, i recommend a place that does 30day exchanges. I had to keep switching the Rxs, trying to find the prism that I tolerate the best. Luckily EyeDRX has been patient with that. I'm almost done trying them out. It seems they just might help a little bit to take the edge off the symptoms. When I increased the Rx to see if I got a more noticeable improvement, they actually felt worse. So it may involve some playing around til you find something that works. I dunno if they'll help much in the end, but even if it helps a tiny bit, might as well try it. It's also the vision therapy, that is the main thing that's supposed to help. And eventually the goal is to wean you off the prisms. So depending on what your issues/symptoms are, that may be something to consider.

Hi there-

In theory my vision is corrected to 20/20. However I can't read a book. For a while problems were blamed on a visual field issue - now I just don't have answers. At the last appointment, she replaced a plug and rx'd restatasis. the dry eyes don't explain all my problems however.

Tks a bunch for the info,

noreen

Wonderful!

Noreen,

Were you sick for a long time and have never really been well since? We were all put in the hospital with swollen glands and running a continuous fever, so tired we couldn't move and our body hurt all over. We could barely lift our heads up. The guy that got sick is not our blood kin - and he has issues similar to mine and my sis. We saw the same doctor and got the polio and DPT shot from him all about the same time. My sis has real bad orthostatic intolerance and me with POTS - I don't think our friend has been to really try to figure out what is wrong - but he still drags through life. I just feel like there is some sort of connection here. But, then again alot of genetic things run in my family too - like neuropathies and miagraines etc. They thought we all had mono, but the test was negative. IT'S A MYSTERY!

Issy-

Brain fog strikes again. It was the smallpox vaccine that I had the worst reaction to and the Army/Air Force had to fly in something. It was treated as rather secret and at that time you didn't question your government.

Could be a common denominator with vaccines and somehow what they used at the time affected those of us with EDS as the protein was metabolized differently.

So I agree it is a mystery.

If they are going to make such a big deal about their concentration on rare diseases, they need to be held to what they say!

Here is the letter I emailed to CR@Shire.com

Mr. Angus Russell, Chief Executive Officer

Ms. Tatjana May, Chair of the CR Committee

Shire Pharmaceuticals

725 Chesterbrook Blvd.

Wayne, PA 19087-5637

USA

Mr. Russell and Ms. May,

Shire Pharmaceuticals has made it a part of its Corporate Responsibility agenda to be at the forefront of awareness of rare diseases and the specialty drugs needed to treat them. As a patient with a rare disease, I heartily applaud your efforts. I know, firsthand, the ?particular challenges facing people with rare diseases.? This kind of forward and compassionate thinking is what is needed to provide the necessary research and development of new therapies to treat many of these poorly understood conditions.

However, Shire?s recent decision to pull Proamatine from the market, while may be good business, is poor practice of your stated goals. As Mr. Russell said in a recent interview, Shire is ?not about sales and marketing? like the rest of Big Pharma. This drug is the only drug that treats hypotension and is vital to the daily functioning of many people. Though, we may be a small part of your profits, Proamatine is a large part of our treatment regimen.

Please continue to advocate for the treatment of rare diseases. Please continue to practice what you put in your CR Report and support innovation to address unmet needs; continue to manufacture Proamatine. Please live up to your motto: ?to be as brave as the people we help.? I have no choice but to be brave; I live with this condition every day. You have the luxury of choosing to be brave.

Thank you,

Excellent Letter!

I generally agree with the 'you catch more flies with honey than with vinegar' approach. I couldn't find an e-mail address on Saturday so appreciate your post.

noreen

There's something they did at the therapy center called the Sensory Organization Test (you can google it) and that tells them if you're having both vestib and/or vision processing issues. I scored zero on both, even though other vestib testing came up fine for me, and that's what led them to know something was wrong with me.

...they also have me trying prism glasses, to see if that helps as well. Sure, all this therapy may not work, or might only help ease things a little. But I think it's worth it to try,

Best of luck to you!

Hi caterpillar-

I was just researching prism glasses the other day so really appreciate your post. I would love to be able to read a novel but my vision gets blurry and / or I can't follow from line to line. I use to read at least one novel per week so this is a huge issue for me.

Please keep us apprised as to how you do with the prism glasses. I do not know whether the neuro-opthalmologist I see is certified but will check.

tks again for the info

noreen

Another question - did you get sick shortly after either a DPT shot or a polio vaccinne? I think this is what did me in. It's so odd, my sis and a guy friend - all of us got sick after the polio vaccine

Issy-

I got very sick after the polio vaccine. I remember the hospital had to have the army fly in medication for me. I have never really had a satisfactory explanation for what happened - I never had a reaction to any other vaccines.

noreen

I can't right now b/c the study isn't published yet, but as soon as it's released, I'll post a link.

Thanks, Nina.

Obviously my sieve like memory has struck again.

They're about to publish a study on the use of Octreotide injections for folks who have the hypermobile issues and POTS; If I recall correctly what he described to me, it did a really nice job of raising bp, stabilizing heart rate, without causing hypertension.

nina-

Can you give us any further info on the study of use of this drug in hypermobile/autonomic issue?

I eat a lot of canned refried beans. They are already loaded with sodium. When I say "a lot" I mean over 31 oz a day.

How do you eat them? Any recipes or tips greatly appreciated.

Hi and welcome to the group-

I had only heard of the drug in relation to cancer so I went to wikipedia and found this-

Since octreotide resembles somatostatin in physiological activities, it can:

Inhibit secretion of many hormones, such as gastrin, cholecystokinin, glucagon, growth hormone, insulin, secretin, pancreatic polypeptide, TSH, and vasoactive intestinal peptide.

Reduce secretion of fluids by the intestine and pancreas.

Reduce gastrointestinal motility and inhibit contraction of the gallbladder.

Inhibit the action of certain hormones from the anterior pituitary.

Cause vasoconstriction in the blood vessels.

Reduce portal vessel pressures in bleeding varices

It has also been shown to produce analgesic effects, most probably acting as a partial agonist at the mu opioid receptor.[1][2]

So while it can increase vasoconstriction, it would seem that you would exchange that for other side effects we fight against such as Gastroparesis (slowed gastro motility )

Have you seen an endocrinologist? Who is recommending this?

No, I never heard of Himalayan salt, or "Celtic" sea salt, is that different than regular sea salt? Sea salt is what I've been using to add to things.. but ha, dont know if it's celtic or not. Where do they sell the Himalayan or Celtic, a Whole Foods type place?

I got my Himalyan salt online from Swanson vitamins. I have found their quality and prices great - I have been getting stuff from them off and on for 10 years or so.