Noreen

[quote name='dsdmom' date='Aug 13 2010, 10:18 AM' post='144373

I take 10 mg of Adderal in pill rather than the time release. I took up to forty when I was working.

I've had at least six, probably more, over the years. I wouldn't worry about it but I tend to take a pain pill prior to the test so I don't tense and hurt my back from having to remain in position for 20 minutes.

Given your age, I would probably try a couple courses and see how you do. I was so upset when I had to give up getting my MPH but I was also working at the time.

I'm hoping that the school wont be too bad. I am looking at taking a class or two to see how it goes.

One thing to keep in mind is that hospitals are huge - it easily can be a mile walk to your desk from parking even with handicapped accomodations.

I was thinking that I might try a doctors office. If we are still here I am looking at applying with WHO.

What is your undergrad degree in?

My BS degree is in Applied Math with a minor in BA and Chemistry

Have you thought of Public Health? Epidemiology would seem to fit you perfectly.

Here is a link to a free intro to Public Health course. http://www.asph.org/UserFiles/PH%20101%20Collection.pdf

Johns Hopkins Bloomberg School of Public Health also has oline courses. There used to be a repository of online PH courses - Supercourse I believe but I no longer have the link. If you are interested let me know.

Swiss School of Public Health website - http://www.ssphplus.ch/spip.php?page=ssph_home〈=en

Given your age, I would probably try a couple courses and see how you do. I was so upset when I had to give up getting my MPH but I was also working at the time.

One thing to keep in mind is that hospitals are huge - it easily can be a mile walk to your desk from parking even with handicapped accomodations.

What is your undergrad degree in?

If they're looking for proof that it works, what say we all just march up there and then stop taking it and let them see what happens?

That ought to be proof enough!

I am with you there. If anyone wants to urge them to address this ASAP -

The contact information for the Shire is:

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That is not good news.

Why do they start on the one drug many of us benefit from?

l

FDA link http://www.fda.gov/NewsEvents/Newsroom/Pre...s/ucm222580.htm

When I saw this NY Times article I thought of you.

http://www.nytimes.com/2010/08/14/health/p...ance&st=cse

Not a lot to offer there but they do list one site which brokers insurance.

Given that your case is unusual, and therefore of educational value to physicians in training, I am wondering if your doc could reach out to docs at Harvard Medical to ensure continuity of care. You have the workups showing any structural problems with your heart - those are really the big ticket items which the student policy is probably trying not to pay for.

My cardiologist hasn't been all that helpful.

my doctor has said on ocassion that if people with physicaly limiting disabilities ...

But you have a physically limiting disability which is not susceptible to normal accomodations which can be made for other disabilities.

Perhaps he thinks you could do it if you had an environmentally controlled space suit and a reclining wheelchair. Personally I can't see getting hired in such a get up.

ALL of you specifically are in my prayers for respite and peace, healing, renewed hope, pleasant surprises, energy out of nowhere, courage, and a palpable sense of worthiness, wellbeing, confidence, and love.......tons of love. I so pray for that surprising out of nowhere sense that things are 'okay' & things will improve around the corner......& that they most assuredly do improve for you. And improve within minutes or hours of me typing this. I pray you realize how exceptional you are and giving and courageous ~ and that others might refresh you and bring you joy ....... Whether it's POTS or some other obscure debilitating illness -- you are heroes in writing your hearts in this thread......showing all just how amazing you are - even and perhaps most especially here in your days agonies........ May sweet peace envelope you and keep you steady on your path seeking all that is good for you and those you hold dear.... I do very much care.

Your prayer is beautiful!

I'll second Reen's shout-out for motherwort. It's my drug of choice for the last year or so. I use it during a hyperadrenergic flaire or hot flash. Side effects caution use if you have thyroid disease <which I do> but my PCP is aware that I am taking it and it has not impacted my hashimoto at all ... by way of lab work.

It also cautions lowering blood pressure ... but since I take it during a surge, i've not had any issues with that.

It's my best perimenapause pal and the most effective antidote for hot flashes or palpitations.

Which method do you use - tincture or pills? If you have had luck with pills, what brand?

I have hesitated to try any pills since I have best luck with motherwort but I sometimes have a problem finding it.

Corticosteroids can irritate the stomach. I was told to always eat something with the pills.

Hope you are feeling better soon.

Everything sort of depends on why you were prescribed the methylpred. Which doctor rx'd it, at what dose, and for what reason?

There are many diseases for which it is prescribed which can also give you many of the symptoms bothering you. I was on corticosteroids for 6 years at doses ranging from 40 mg to 2 mg.

Corticosteroids are really not to be messed with without medical supervision. E.g. you can't suddenly stop a high dose after being on it for a period of time without dangerous results such as stopping your heart.

You have to check back with the MD who gave them to you.

I have had the same experience with Kava kava. Valerian did not have the same effect on me but it has been quite a while since I tried it

I have had good luck with Motherwort Motherwortas an anti-anxiety med. I use the tincture formulation, however, and this naturopath disagrees in his thesis with that mode of administration.

How are those who are benefitting ingesting the herb? It could be that for some the tincture form while less potent is more agreeable for those of us with autonomic issues.

The only problem would be that I live in Australia an that link you gave me seems to be based in the US but I will try my luck anyways. Thanks

Sorry I hadn't realized the rave scene was present in other countries.

The US NIH has attributed serotonin syndrome to ectasy use

Your situation is so different because it has lasted for so long - well beyond any normal half-life. A medication mentioned that might be worth checcking into is Cyproheptadine (Periactin), a drug that blocks serotonin production.

best of luck,

noreen

Been on the Bystolic for a month and so far.... It works! I haven't had any near syncope since starting at just 5mg once a day, my BP is 120/75 all day every day, and my pulse never goes over 145-150 even when riding my bicycle/running. No side effects that I notice, besides when I first started I felt sort of like my body "energy" (vitality, whatever you wanna call it) was drained from my body but not my mind. Not like it made me sleepy, but just sort of made me feel a little bit more flat.

Also somewhat related I added 20mg Prozac to my daily regiment for mood and also for potential autonomic improvements about 3 weeks ago; it has helped both quite a bit.

...but some bad news, I am fighting back issues and have a ruptured disc and two others that are degenerating... really a crappy situation, being only 22 years old and having the back of a 40 year old smoker (lol that's the way my dad put it when looking at my MRI with me at least).

More updates as they come, and thanks for all the support and knowledge from this site - it's great!

Glad the bystolic is helping. My sympathy on your back issues.

How are your migrainess?

Have you thought about applying to NIH undiagnosed disease program ?

As your doctors have reached the extent of their knowledge, hopefully they will support you in your application. I so hope something works to ease your symptoms.

noreen

I am still trying to find a safe cleaner over here so that the kids can help me. I really do appreciate all of the advice.

Vinegar, baking soda, borax are all safe.

It is amazing what can be done with vinegar.

Generally though good cleaning is from elbow grease - a scant resource for us. Here's a link to age appropriate chore lists for kids.

http://housekeeping.about.com/od/chorechar...eapprchores.htm

I was prescribed CoQ10 for migraines = 1000mg by a headache center. Reduced dose to 500 mg ddue to cost but I have so many things going on it is hard for me to tell whether the change made any difference. The NP at the cardio office liked that I was on it.

I wouldn't be concerned about any effect on BP .

Also, XClear from the health store and Sinus Buster and Collidol Silver.

Colloidal Silver is listed by the recent Consumer Rports as one of the top 12 supplements dangerous to your health.

Be careful - if it turns your skin blue, it is permanent.

Hi Jana-

did they do a bone scan to diagnose you? I don't have the results of mine yet.

I have a variety of wrist splints and braces from dealing with RA, hypermobility syndrome, and chronic wrist pain from a work injury. It depends where the pain is whether a brace (and which one) might help.

I use lidocaine patches on my wrist and generally put a brace on over it to keep it in place. the lidocaine patches help and were prescribed by a physiatrist, As I am on Topamax I can't do Neurontin.

Cymbalta 60 mg bid helped for several years. It was originally developed for chronic pain.

What type of doctor are you seeing?

So sorry for how you were treated.

Just a thought but perhaps you could check out Mass Limited insurance. I think it is set up for non-nationals already here but maybe you could squeak through on disability issue. essentially given your condition, you would end up disabled here due to the risk of syncope. Maybe the student rep office could give you some help.

I hope something works out for you

Sounds like a good doc to me - he is concerned, caring, doesn't want to do anything to make things worse, and he listens (and it sounds like he listens respectfully).

I tried acupuncture for migraines and had horrible reaction.

You can always give Giardinera, Italian mixed pickled vegetables, a try for variety.

Hope you get some relief,

noreen

Maxine-

Praying that your pain subsides and that you are granted strength to help you through all the stress.

Sending prayers for strength and healing as well as loving energy to all family members.

{{{hugs}}}

noreen

Hi-

I use to enjoy gardening before the dys monster got worse over the last 2 years and now I just hide in the house from the heat and sun. However I have a rolling garden cart like this which enables one to move around in a scooting squat. Have to conserve energy however you can. Sweeping with a regular broom can be quite hard on the body. I have an ergonomic broom I got a couple years ago which helps because I can sit in a chair and use it if I need to. Also I have a terry cloth floor cleaner from Target (concept is similar to this. For floor cleaning, steamin is the way to go - a group of women wrote a great review on Amazon so you can check that out with a floor steamer search. From personal experience, I had the Eureka Floorsteamer for 6 years before it gave up - worked very well, the Shark is not worth it as it is not at all durable - lasted only about 6 months before my son knocked it over and it snapped in the middle. I now have the Bissell steamer which works okay but I wouldn't buy it again.

Since your son is 10, make sure you keep any small chairs you have for him. If sturdy enough for you to sit on tghey can be helpful for lgetting lowering to the floor level and then you can reach for something - this way you are not doing a full bend over to pick something up. Kids stools are also helpful for putting a laundry basket for taking laudry out of the dryer. Again, it reduces the 'bend over'. Microfiber clothes (good ones) are your friend as damp you can clean windows and dry they are great for dusting - will fit on the end of a Swiffer for doing walls.

Now is a great time to get your son to help - he can easily put his clothes in a hamper and bring laudry to and from the machines. He can dust and clean with microfiber clothes without chemicals. If you can get a rolling garden stool, he could vacuum while you roll and supervise.

A stool in your kitchen is a good idea for resting. One where you can put your feet on a bar is a good idea to help exercise your calves a bit and keep the blood moving. In my former life as a health educator for lead poisoning prevention, I encourage using a cut down gallon milk carton as a cleaning bucket - I encouraged it because the clientele my county health people were working with usually had financial issues but the concept works for those of us with disabilities and I encouraged the use of the buckets as facilitator of my local chronic pain group. It is significantly lighter to lift a quart of water with a couple drops of cleaner thereby conserving energy for other things.

Cooking - the crockpot is your friend. The easy clean liners for crockpots are available everywhere these days. Cook in double batches and freeze a dinner..

If you are buying anything suggested online, consider registering to benefit the forum

Hope some of this helps - I don't have any more energy at the moment,

noreen

Fri, I'm still sick from living that way, but I didn't really have a choice. I wanted to go to a hotel, but that would have meant it would take longer to come up with the thousands of dollars to replace the central air. Tomorrow makes 1 week with the AC back on.

During those 3 weeks, I stayed in the basement, but the last few days it got up to about 80 in the basement, which is too hot for me. I used my cooling vest, I bought large bags of ice and put the ice in huge pots, which I placed in front of the fan in the basement (yeah, air conditioning circa 1932). I also used a water mist on my body rather frequently and then stood in front of fan for about 60 seconds of happiness. It was so hot inside the house at one point that my automatic ice maker in my fridge made exactly one batch of ice all day -- 6 cubes. Normally, it can fill the holder, which is usually enough for a big dinner party without ever running out.

I've been sleeping a lot this week and need every minute.

Nina-

glad you got AC back. I'm so sorry that had to happen while you are still recovering from the accident and everything else.

I hope the rest helps.

{{hugs}}

noreen