janiedelite

Doozlygirl, I'm assuming that the urine test for carcinoid was the 5HIAA. This only tests for the serotonin that is produced by midgut carcinoids, and only the serotonin that is produced during a flare during that 24 hr urine period. There are foregut carcinoids in the lung and stomach that primarily produce histamine. The best test for carcinoid in the foregut, midgut or hindgut (colon) is CgA (Chromogranin A). This blood test is for CgA which is released by all types of carcinoids and is 95% accurate in detecting carcinoids. Also, it will detect elevated tumor activity that has occurred within 7 days prior to the blood draw.

Other tests include neurokininA, pancreastatin, gastrin, etc.

I have symptoms like yours. My mom has carcinoid syndrome.

Here's a link to DINET's dysautonomia brochure:

http://dinet.org/images/DINETservicesbrochure2.pdf

I have high BP on standing, raynaud's and other symptoms of vasoconstriction. My excess constriction is a result of the high norepi levels that I produce in response to orthostasis. But my underlying problem is actually blood pooling and the vasoconstriction is my body's way of compensating for the blood pooling. I wear 30-40mm thigh high hose (I'd use abdominal compression, but it is too uncomfortable). I also use lots of salt and fluids. When I'm overly hydrated and/or compressed, my upright BP's are lower.

Reglan has caused tardive dyskinesia (uncontrolled muscle movements that can be permanent) in long-term users. My primary doctor was hesitant to keep me on promethazine/phenergan very long because of this same side effect. Domperidone and erythromycin can work as a pro-kinetic but don't cause TD

I agree that if it gets much closer to your next IVIG treatment date and you still haven't heard from the prescribing doctor, you may have to ask for the neurologist on call. Can the allergist's office help communicate his concerns? Good call on getting the care coordinator.

My mom has carcinoid syndrome, a neuroendocrine cancer, and Dr. Vinik has quite an excellent reputation for diagnosis and treatment in the neuroendocrine world. Congratulations on finding such a stellar doctor!

Sorry if you've already tried some of these suggestions, but I'm trying to think of how you could get your school to help you properly. Your parents could demand an IEP meeting at any time, and the special educator, social worker, and usually one of the vice principals will meet with them and discuss your case. In Oregon, parents have the right to ask for as many IEP's as the parents feel is necessary. The squeaky wheel gets the grease!

If you've already gone this route, your parents can always go above the school to the district level and complain to the head of special education. The ADA requires that the school make every effort to educate you in spite of your disabilities.

Lastly, it may be helpful to approach your doctor about this. Perhaps he/she can submit letters or phone calls to the school and help advocate for you. It's always helpful to have as much documentation of your illness and subsequent disabilities as possible, especially if you meet with the district or your school faculty.

I'm sorry to hear that you're struggling so much. It's heartbreaking to think that your social worker can look at your impeccable record and your current level of achievement and not think that you're more frustrated than anyone else with this situation! Keep pushing (or have your parents push) to get the help you need, even if it means the district has to educated you one-on-one.

There are doctors out there who understand the correlation between hypermobile EDS and dysautnomia/POTS. My cardiologist trained under Dr. Grubb and checks all of her new patients for hypermobility. Although, I hope that your daughter never has the need to try to find a doctor.

That's awesome! Since you have folks who will be driving you and watching you, it may be a good idea to premedicate with any meds you would normally use after a flare (as long as it's safe to take them together). Bring earplugs and darkly tinted glasses in case you start feeling overly stimulated by the sounds and lights. Don't do too much standing, if possible, and try to listen to your body and lay down if you need to (you might want to bring a light blanket in case you have to lay on the floor near your seats.

Hey, even if you just get to enjoy a few songs and then have to leave, it will be SO worth it!

Yay!!!! I'm so glad that you were encouraged and finally have some hope!

I've found that chest pain that is relieved by lying down is probably POTS-related, and due to thoracic hypovolemia.

My neurologist didn't want to put me on nortryptiline because it can make tachycardia worse.

Very well said, Nina. And kudos, Alyssa, for doing what's best for your body even though you feel awkward about it! I'm so proud of my dysautonomia friends!

It depends on what is underlying your neuropathy. I have the diagnosis of small fiber neuropathy from Mayo. They couldn't find any cause for it and said that it could have been when I had mono in 2006 that activated an autoimmune response that damaged my small nerve fibers. He said that hopefully my body will one day "reset itself" and the nerves will heal. So he didn't feel that my case was progressive because my symptoms haven't severely progressed and because he couldn't define an actual cause for the POTS. However, if your neuropathy is caused by diabetes, a documented autoimmune condition, amyloidosis, etc., then controlling your underlying condition will determine whether your neuropathy will be progressive.

Midodrine can make me feel more energized. However, just a small amount will exacerbate my hypertension, cause bradycardia, chest pain, tremors, and other hyperadrenergic symptoms. I have to take just 2.5mg at most and combine it with carvedilol. I asked my cardiologist about doing this since the carvedilol is an alpha blocker and she said it would be fine. Otherwise, the chest pain in particular becomes disabling. And it seems to set of these hyperadrenergic symptoms for an entire day. I can't take midodrine two days in a row for this reason. I have such an elevated hyperadrenergic response to it.

That is just precious! And like Songcanary wrote, it just shows that a disabled mom can raised great kids!

Tramadol certainly could be contributing to your mood right now. My hubby was on it for a few months following a car accident and had a horrible time getting off of it (dark thoughts and terrible pain). He ended up taking nortryptiline to help with the withdrawal for one month and it really helped. I asked my neurologist about taking nortryptiline for my pain issues but he didn't want to prescribe it because it can cause tachycardia. Some doctors feel that because tramadol has both narcotic agonist and antagonist properties that it can't cause the physiological dependence that other opioids can cause. In my experience, tramadol withdrawal is actually very similar to opioid withdrawal, which can definitely cause depression.

Personally, I know that when my dysautonomia symptoms are worse that it's harder to stay positive, probably due to lack of blood flow to the brain. Increasing my compression or adding more salted fluids to my routine can help.

It may be helpful to contact a nearby doctor from DINET's physician's list:

http://www.dinet.org/physicians.htm

I made sure that the GI doc I went to see was knowledgeable about how dysautonomia affects the GI tract. I didn't want to go through another appointment where the specialist only refers me to someone else.

Thanks Issie. I may have to get a pair and see how they do.

I've used Jobst Relief 30-40mmHg thigh high stockings for several years but feel that I could benefit from higher compression. I'd like to use waist-high hose and have a pair at home, but they make my tummy actually more bloated and painful. So I bought a pair of Mediven 40-50mmHg thigh highs last summer and really liked how I felt with the additional compression. But I've worn them several different times and each time they bunch up behind my knees, making my skin painful and red after a few hours. I end up taking them off because it feels like my skin is starting to blister by the end of a day.

So I saw that Sigvaris also has 40-50mmHg hose (but they're about $40 more than the Medi's). Has anyone tried these? How did they feel? Is the fabric smooth or coarse? Do they gather/bunch up behind your knees?

Thanks!

I hate bananas,

I'm very interested in knowing how you progress with this treatment plan. Thanks!

Can you try getting regular saline infusions while you have to be off the midodrine? How about desmopressin/ddavp?

Hey, sorry to hear you've been so ill suddenly. It sounds like you're trying everything possible to pull out of this flare, and I agree that the sudden weight loss sounds like volume loss. Have you ever tried desmopressin/ddavp? It is synthetic vasopressin and worked wonders for me at first but then caused worse hyperadrenergic symptoms as the weeks passed. But it could help you regain some of the fluids lost, although it sounds like you're sweating quite a bit out...

As far as work is concerned, you've certainly pushed through this stuff in the past. But it may be a good idea to check into a long-term disability policy, if you don't already have one and if they're available in Australia.

I hope that this flare ends soon!

Maiysa,

Thanks for checking but yes, you can say the name of products you use as long as you aren't telling someone else they need to use them (but just saying that you like this certain product).