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Posts posted by janiedelite
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I think you could see the lump under clothing where the vertical closure line is.
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I've had 2 hip surgeries under general anesthesia and did fine with each. I have nausea regularly anyway, so the anesthesiologist gave me plenty of anti-nausea meds before hand. I woke up with the least amount of nausea I've had in years!
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It looks like the same type I put on patients in the hospital who'd just had abdominal surgery. They worked fine. The main complaint was that for shorter-waisted people they could ride up and squeeze under their rib cage.
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I agree that my mouth guard has helped more than anything else. My dentists have made them for me at about $500 each, although my insurance pays for most of it. I found that the lower jaw mouth guard works best for me (I still had quite a bit of pain with the upper jaw guard).
Otherwise, physical therapy for my jaw has been helpful. But I've gotten the most relief from a physical therapist who specializes in myofascial releases (the John Barnes technique).
Is there any way your doctor can call in a prescription to help with the pain in the meantime? Perhaps a muscle relaxer would help too?
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Mine is in the 50's.
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Did your parents contact the insurance company directly? It sounds like they'd approved a visit with this doctor in the past. Do they just not pay for testing with this doctor?
If this doctor ends up being not covered by the insurance, you could have your primary care doctor appeal to the insurance company to cover a doctor who is out-of-network based on the fact that there are not doctors in-network who can diagnose or treat your specific health condition.
If the insurance company is not fulfilling their part of their contract, your parents can always contact your state's Insurance Commissioner. Each insurance company has to get licensed in that state and can be fined by the state if they're not abiding by their contract with each customer. You can usually submit a complaint on-line at your state's insurance commissioner's website.
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If you have a question for DINET's Medical Advisors, you can submit it here:
Please keep in mind that the medical advisors can't give you specific advice related to your health issues. But they are available for questions related to dysautonomia in general. Also, please know that your question may not be answered or it may be answered in a future publication of the newsletter.
Thanks!
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I was told by the Mayo neurologist in 2009 to just be upright as much as possible. He was all for walking as exercise to improve your skeletal muscle pump as well. Also, he wanted me to tilt the head of my bed up, which I did for a year and it didn't help, but there have been MANY discussions on tilting your bed on DINET. He said that if you're mostly bed-bound, to get a recliner because at least keeping your head higher than your feet will provide some vascular resistance.
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If it comes in waves, it could have something to do with your peristalsis. Could you be having neuropathic dysmotility? Or an obstruction/pseudo-obstruction because of a section of GI tract that isn't working properly?
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. I got to sit in on a meeting where the goal was to try to develop a comprehensive treatment center for patients with neuroendocrine tumors (like my mom's carcinoid syndrome). The problems we encountered were:
- the real experts on the disease are already too busy to designate clinic hours at a location other than their current facility
- anyone less than an expert only made the patient care experience less successful
- getting experts from each discipline in the same location was also impossible
I think I should have bought a lottery ticket that day. I would have had better luck than trying to put together this center!
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Julie85, that's really interesting about the initial rise in norepi but the subsequent decline in norepi after 2 weeks. I did have the traditional symptoms when starting paxil (anxiety, flushing, and my burning skin pain got worse - that one never quit). But after 2 weeks, my usual orthostatic hypertension turned into dramatic OH (SBP was in the 50's after standing for a few seconds). Normally I can't tolerate midodrine because of hypertension, chest pain, etc. But I was taking midodrine 10-15mg 4 times a day from weeks 2 through 8. After week 8, my BP leveled out, but I had worsening flushing, feeling burning hot all the time, skin was so painful, and was having BM's over 10 times a day.
By the way, I did call my doctor a few times and it seems her nurse miscommunicated the severity of my symptoms. When I got in for a follow-up, the doctor was alarmed at my BP's after starting paxil and said she was never told I had such severe OH.
During week 12, I was having near-constant flushing, nausea, horrible fatigue, and felt like my skin was on fire. I called my doctor's office and let them know I had to get off of this drug. The only reason I stayed on it for so long was because my doctor is doing everything she can to help me, and she had a lot of confidence in this medication.
My reaction to most drugs is quite unusual, so don't take my experience as a reason not to try something your doc recommends. And with my mom's carcinoid syndrome and my flushing issues, I wonder if I may produce too much serotonin (although my 5HIAA's have been normal several times).
But my doc said she'd never seen BP like mine caused by an SSRI. However, your comment makes me understand more about why this could be happening. It's been proven that my orthostatic hyperstension is mainly compensatory, so if you lower my norepi levels my BP will drop.
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I was diagnosed with small fiber neuropathy as I have burning of the soles of my feet, palms of my hands, mouth and face much of the time. So my docs checked for all they could think of that would cause neuropathy, including the tests you mentioned above. Many illnesses can cause peripheral neuropathy, like you're describing. It sounds like you have good doctors!
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GingerA has a good point... you really can never make someone understand how you are feeling. I think it can be helpful if, when someone wants you go do something you're not well enough to do, that you let them know you want to be able to help, you're sorry that they have to take on the extra load, and do what you can to show that you care for them or thank them. It might just be a note slipped in their lunch, a thank you email card, or just an extra hug. It can be really frustrating, especially with siblings, when you are perceived as not doing what you could. For me, it's been really helpful to make the extra effort to show those people how much I care for them, even if it's just words, phone calls to see how they're doing, or a note.
After you've done all that you can to facilitate a loving relationship and if that person is still angry because you're not physically able to help, try not to feel guilty but do what you can to encourage yourself. The forum is always here if you're having a hard time, or you could escape in a good book or TV show.
One thing I've learned after being sick with this for over 5 years is that my relationships with the people I love are the most precious thing to me. They'll never really understand how I feel day after day, but I try to patiently remind them when they forget and wonder why I can't do such-and-such. They live in normal, healthy bodies that can eat, play, do what they want when they want. Feeling sick all of the time is totally foreign to them. I don't care if my family knows exactly how I feel all of the time, as long as they're willing to love me and include me in their lives.
I'm sorry that I don't have a straight answer for your question. You're really young to have to go through this degree of chronic illness. Hopefully your body will start cooperating some day and you won't need to practice this degree of patience with your family anymore.
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My docs are hesitant to put me on any hormone right now too. But I know that I can't tolerate any progesterone, even in combination with estrogen. I did use the Nuvaring which didn't give me quite as much nausea as the pills, but I was still uncomfortable with nausea all the time. My mom also gets nausea and vomitting with progesterone. But we both tolerate estrogen just fine (I took clomid for awhile and did great, and she's on estrogen replacement).
If you do want to go ahead and try the medication, just make sure you don't have any plans for that day and maybe have an antiemetic on hand just in case.
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Unless you had a port or a PICC line, starting an IV on yourself would be very difficult in my opinion.
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I have ODS and it did require a prior authorization, but they did approve it. You're right that it IS expensive. I get it through a specialty pharmacy that ODS contracts with. It's FedEx'd to my house monthly and I have to be home to sign for it, since the octreotide has to be kept cold and they can't just leave it on my porch.
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I had a sleep study and don't have sleep apnea, but do have POTS.
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There are still quite a few more meds to try (http://dinet.org/what_helps.htm). As for me, I've tried midodrine, florinef, carvedilol, domperidone, erythromycin, provigil, amantadine, mestinon, ddavp, saline, paxil, clonidine, neurontin, lyrica, magnesium, and now I'm trying octreotide. In order for my cardiologist to be comfortable trying all of these meds, I had to go to Mayo for thorough testing, and I had to see at least a dozen specialists until I found a doctor in my area who was trained to treat dysautonomia.
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It's always important to get your POTS symptoms checked out medically. We may not all get the answers as to what's causing our symptoms, but we should keep pushing for answers and improvement in our symptoms. That is the only control that we have over our illness. There are some underlying causes of POTS that can be life-threatening such as heart failure, carcinoid syndrome, porphyria, etc. As long as I'm still sick with POTS, I'll continue to get screened for underlying causes of POTS as my symptoms dictate. Other than that, I consider it my job to take care of myself by worrying as little as possible.
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I don't have answers for you as for as prognosis, but wanted to offer congratulations on getting some of your symptoms diagnosed properly finally! I'm so glad that your doctor is taking you seriously. There are many meds that can be used to treat dysautonomia, and hopefully you can find the right combination that will give you more energy to play with your kiddos!
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My mom takes it because the octreotide she's on for carcinoid syndrome alters how her pancreas produces enzymes. To take the creon, she sprinkles it over a tablespoon of applesause and swallows (you're not supposed to crush the little granules and it's better absorbed if taken with food). She does this with each meal. For her, she's noticed better absorption of nutrients. She's not experienced any negative side effects and has been on it for years.
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My cardiologist had me switch from making my morning salt drinks with table salt to pink himalayan sea salt, and also to add EmergenC for the potassium. I can't say that I've had any improvement since doing so, though. I use about 2 teaspoons of the pink himalayan sea salt a day for the last year.
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Sorry, I haven't seen Dr. Gilden. It sounds like they're going to do autonomic testing? You may want to inquire about whether you should forego any medications for the testing as well. When I had a TTT at Mayo, they didn't give me any injections or other meds during the test. They based their results simply on my body's response to standing.
Best wishes!
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You had mentioned concern about the GI doc only treating the upper GI motility issue. I actually have a fast-normal gastric emptying rate, but my small intestines emptied really slowly on the motility study. I did get great relief from the meds used to treat gastroparesis. I received reglan once after a surgery and got great nausea relief (although I wouldn't want to take it long-term, either). Erythromycin didn't really help me. Domperidone worked great for my nausea, but I had to pay out-of-pocket and get it from a compounding pharmacy. Also, for some reason my BP dropped terribly after taking domperidone for several days (60's/40's), but that was a very unusual side effect.
My Results With Octreotide After Two Weeks
in Dysautonomia Discussion
Posted
Until this point, I've been unsuccessful on all POTS meds because any pressor or fluid expander raises my BP quite high and causes more chest pain, headaches, etc. Any other med drops my BP quite low. So my doc has give me octreotide subcutaneous injection 200mcg twice a day for the last 2 weeks.
For the first 10 days, I had quite severe diarrhea in the morning lasting an hour or more, nausea lasting at least 30 minutes after each shot and sometimes all day. I knew these side effects were temporary so I stuck with it. Also, adopting a low-fat diet has helped since octreotide shuts down your gall bladder, causing steatorrhea (fatty stools).
Vitals while standing this morning:
8:30am (I'd been up and about for 10 minutes): 98/77 pulse 115
8:35am took 200 mcg octreotide
8:45am upright: 113/87 pulse 83
9:05 supine: 115/69 pulse 59
9:06 upright for 1 minute: 91/78 pulse 104
I really only get benefit from this medication for less than an hour, which is frustrating because the peak plasma time occurs in 40 minutes. The half life is 100 minutes. But, without octreotide, by the end of the evening my upright BPs are regularly over 135/95 and I'm having more chest pain and headaches than without octreotide. With octreotide, by the end of the evening I'm 130/80's and less symptomatic. I'm still using my compression, salted fluids, and other usual helps.
I'll see my doc tomorrow. Maybe she'll be comfortable prescribing higher, more frequent dosing or the LAR (long-acting monthly shot).