janiedelite

I'm so glad that the other teachers supported you during this meeting. I hope that this semester goes by quickly!

I went to Mayo Rochester as an outpatient and saw Dr. Fealey who is an autonomic specialist. He spent most of my initial visits listening, and absorbed every symptom and detail. He was very thorough in testing. I thought he was great.

The anesthesiologist should meet with you before surgery and familiarize himself with your medical issues. It's a good idea to mention your tendency to have nausea and he'll try to prevent that with meds during the procedure.

Octreotide is a somatostatin analogue that's FDA approved for carcinoid syndrome, other neuroendocrine tumors, and acromegaly. It causes abdominal vasoconstriction. Initially, it's common to have abdominal cramps and diarrhea until you get used to it. This was found under the "What Helps" section of dinet: "Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. Its actions help to prevent postprandial hypotension (low blood pressure after meals). Octreotide inhibits the release of a variety of gastrointestinal peptides and also may reduce postural and exercise induced hypotension (Mathias, 2003). Octreotide does not often appear to enhance supine nocturnal hypertension, however one study reports that it is a possible side effect (Hoeldtke, Bryner, Hoeldtke & Hobbs, 2007)." It's common to start on the subcutaneous doses because they only last a few hours in your system. But there is a month-long injection (Sandostatin LAR) that is useful if the short-acting really helps you. This is a very expensive medication (depending on your dose and pharmacy, it can run $1,000-$20,000/month). I'd make sure your insurance covers it before you get it prescribed.

Wow! Knowing what I know about your OI issues, I'm so surprised you were denied. I guess it's hard to get the folks who read the SSDI forms to really understand the impact of this illness. I live in Oregon and I started applying in early 2008 and had my court hearing in 2/09.

You're welcome And please don't feel that I'm diminishing you're symptoms. You certainly have it rough, and I understand how you could be frustrated! If you get too impatient, or if you continue to worsen, it may help to call up the U W dr's office and ask how their search for treatment is going.

Neti Pot works great for clearing your sinuses!

I'm sorry that you didn't come home with answers, but it's hopeful that he has the resources and willingness to try to come up with a treatment plan. Hang in there!!!

Hi Dani, I don't have much wisdom to give you but wanted to share my support! I'm sorry you feel at a loss for what to try next. Have you tried octreotide? I've heard that it can be really helpful for those who have low BP on standing. Alas, it may also be difficult to get your insurance to pay for it but it may be worth a try!

My doctor didn't want to put me on a tricyclic antidepressant because it could worsen my tachycardia and hypotension. I know that SSRI's are sometimes used effectively for dysautonomia, but I haven't heard that tricyclics are commonly prescribed.

They won't take away your car. It would be up to your treating physicians to decide if you're not safe to drive. You can go back to work through SSDI's Ticket to Work program. They'll continue to provide payment while you're getting training to get back to work, if you recover enough to do so. The Ticket to Work program is designed to encourage folks to get back to work if they're able and not to penalize you for trying, even if you relapse and have to stop working. Here's a link for more info to the government's Ticket to Work site: http://www.ssa.gov/work/

Getting up earlier may make it easier. I try to force as much salted fluids into me as soon as I open my eyes. Also, if your doctor allows, midodrine first thing is great for getting your BP up.

You did such a great job! I don't think I could have explained dysautonomia so well!

If you're already having problems with fluid retention, it would be best to check with your doctor before adding much sodium to your diet. I'm sorry you're having these problems.

Yes. For me, this symptom has improved as I treat all of my other POTS symptoms with fluid, compression, and medications.

Our state has several online charter schools. Perhaps that would be an option?

Yikes! I'm glad at least the principal is understanding. It's like they're asking you to ignore how you're feeling and jeopardize your health because it is inconvenient to them. There are laws that protect students who have a medically validated disability.

My cardiologist really wanted me to start on synthetic erythropoetin (epogen), which causes an increase in red blood cells. However, the FDA requires that your hemoglobin be under 10 and mine was 11. She said that the epogen has some vasoconstrictive properties as well as increasing blood volume.

Can you drink salty fluids, like broth, which may help you retain the fluids you drink longer?

"...awesome?"

If you have the fortitude (or you could have someone do this for you), you could call the dr's office and ask why they included anxiety/depression in your diagnoses. Perhaps it is just as Lieze said, that the doctor feels your terrible physical symptoms are enough to cause depression and anxiety. If they do feel you are depressed/anxious, you could ask them if they could specify in your chart that this is solely because of the severity of your illness. It may be helpful to have someone close to you (like a spouse or good friend) make this phonecall for you because they'll be able to advocate for you, that your problems do not stem from depression/anxiety.

Here's a link to a thread about cranial manipulation and Dr. Bellews: http://forums.dinet.org/index.php?/topic/13489-cranial-manipulation/page__st__15 I've started seeing a physical therapist who does myofascial release (the Dr. John Barnes approach), and have had cranialsacral manipulation in the past. The PT who does this work is very experienced, has a 2 month waiting list, and it's more helpful for me to see a practitioner who is skilled at manipulating the fascia from head to toe. The cranial-sacral work I've had in the past was helpful in the short-term but not for longer than a few days. I do experience flares of my POTS symptoms after each treatment, but in between the flares I have much less pain, fatigue, and nausea. My POTS started 1 month after a bad car accident in 2006. I've had over 100 PT sessions since then, but myofascial work is the only technique that addresses my pain but also the fatigue and nausea.

Wow! What a relief to finally have a diagnosis. This should make your school more understanding about your limitations.

I would check to make sure that the finger your using to check O2 sats is not cold as vasoconstriction can cause falsely low readings. One place I've gotten accurate readings on my hospitalized patients who had poor peripheral circulation is their earlobes.

YES! They are my best treatment since I haven't reacted well to most medications. They significantly lessen my pain, brain fog, chest pain, shortness of breath... all of my OI symptoms.