janiedelite

In the summer I bring a small spray bottle wherever I go. I can spritz my legs which not only helps them stay cool, but also helps with vasoconstriction.

Dr. Tullo actually specializes in not just fainting, but dysautonomia in general. He states on his website that he's able to evaluate and treat autonomic disorders. The folks from DINET who've seen him lately had positive comments. I believe he has a tilt table as well as some other autonomic testing available. If he's close to you, he may be a good resource.

Hi Jen,

I don't faint either, but wanted to say that I think your perseverance is amazing. I'm so glad you found our forum. People like you make DINET the great place that it is. Thank you for encouraging others while you're going through so much yourself!

Some beta blockers have less affect on the BP, so they'd cause less hypotension which can cause worse fatigue. I could be wrong, but it seems that the propranolol that many folks on DINET take seems to have less hypotensive side effects while still managing the tachycardia. How is your BP when you feel so fatigued? It may be a good idea to check it while standing, to get a true idea of how that beta blocker affects your vitals.

I do get a yearly echocardiogram from my cardiologist because of my heart murmur and POTS. However, I only started seeing her because she does specialize in dysautonomia. I don't know if I would have pursued a cardio just to get my yearly echo done.

My mom went to docs for over seven years before she was properly diagnosed with carcinoid syndrome. She was told she was depressed, in early menopause, anxious, etc. She was put on hormones, SSRI's (that couldn't have felt good when she had too much serotonin already), and wasn't taken seriously as she complained about flushing, diarrhea, fatigue, labile emotions (she's normally very calm). After seven years, her endo finally was shocked at her physical state and ordered a 5HIAA. She was in surgery the next week to removed her primary tumor.

There are diseases that produce anxiety as a result of the disease process, like carcinoid and POTS. But it's normal also to feel anxious, depressed, etc. at times when dealing with a chronic illness. Keep the people around you who believe in the wonderful person that you are and who want to help you gain strength and health.

Hi Rissy2D,

I haven't seen any unapproved posts come up. I'm not sure where your comment went. Perhaps just try again?

My physical therapist is a specialist in myofacial releases. I went to her mostly for pain relief, and she's been super helpful. But she also surmised that relaxing the fascia around my vagus nerve would help my autonomic issues. It hasn't. But I'm still so pleased with the level of pain relief I've received.

I've gotten a lot of relief from the orthostatic hypertension after meals by avoiding tyramines. Tyramines have been linked to high blood pressure after eating, and with migraines as well. It's hard, but cutting out all aged cheese (I can still eat cream cheese and cottage cheese), chocolate, processed meat (sausage, pepperoni, ham, etc) has really helped with the chest pain and hypertension I'd get after eating.

I think that benadryl has occasionally helped me because it blunts the sympathetic outflow as Rama mentioned. I've tried taking other h1's and even in combo with h2 blockers I don't get any relief from my symptoms. But benadryl helps with the burning, flushing, nausea, etc. However, it only helps if I don't use it chronically or else it's beneficial effects wear off and I actually start feeling worse.

When I've had a dispute with a health insurer, I enlist the doc who ordered the disputed test/med/etc. They can write persuasive letters to the insurance's appeal committee. Also, have them send you this denial and why they are now denying it in writing. You may need to read your contract with your insurance company. Perhaps they're "bending the rules of the contract" a bit to suit their needs and you can dispute them using their own contract.

If all else fails, you always can file an official complaint with your states Insurance Commissioner. This can usually be done online or by phone. Each insurance company has to get licensed in the state they do business and if the state finds out that they're not abiding by their contract, they can be fined. I find that just mentioning calling the insurance commissioner sometimes gets results.

I've been diagnosed with rosacea and I have those red bumps on my cheeks, chin, forehead and sometimes nose. I also have scaly areas on my face. My nose gets red easily and swells if I have too much flushing. My flushing issues definitely are causing the rosacea. I've got Metrogel (metronizadole gel) that I apply daily which helps a lot, but is quite expensive. I just use a pea-sized drop to make it last. I was also taking oral doxycycline but stopped because we aren't using birth control and it causes severe birth defects.

So I have rosacea on my face, but pernio on my feet. The dermatologist says they're both due to the underlying autonomic issues.

Glad to hear that you made it through okay!

Perhaps your doctor would be able to get you in for some IV fluids while you're waiting for your test? Can you call your doctors office and see if they have any suggestions that would help tide you over til your test?

Is there any way they can give you some IV fluids pre-procedure? Perhaps that would help you recover quicker. Best wishes!

Hi Elizabeth and welcome! I started having POTS symptoms (fatigue, nausea and tachycardia mostly) in 2006. But in 2008 I started to feel like areas of my skin were badly sunburned, particularly on my face, hands, feet and my mouth also burns and tastes metallic. I also started flushing, particularly in response to heat, stress or activity. What prompted me to reply to you was that I notice when I lay down, it takes about 30 minutes but the burning I usually feel while I'm upright in my extremities slowly increases in my face. I've held a mirror up to my face when this happens and it looks from slightly sunburned to tomato red depending on the day.

I've tried gabapentin 2700mg/day which only helped a small amount. Paxil made the burning so much worse. Carvedilol does help a little bit, but makes me tired.

I've realized that I wake up with very little burning most days. The burning really kicks in at around 2pm. I realized that eating is a huge trigger for my burning pain. I started cutting out dessert and immediately noticed a decrease in all of my symptoms (from burning to nausea, fatigue and overall body aches too). My mom has carcinoid syndrome and she also has this burning pain, which sugar makes worse. She follows a low histamine/tyramine diet in order to control her flushing, GI issues, fatigue, and burning pain. I decided to start that diet and found I also get incredible reduction in all of my POTS symptoms. It's a hard diet to follow and has a lot of restrictions. But at least I had my mom to lean on and help me figure out what I can eat.

I still have episodes on increased symptoms when there is uncontrolled stress or heat, or I really want to eat a "trigger" food. And it seems that eating anything at all triggers my symptoms to some degree each day. But I'm so thankful to have some of this burning pain under control!

Just my experience. Best wishes.

Glad to hear you got good news for a change.

Have you tried checking his blood pressure and pulse after he's been laying down for a few minutes, then have him stand and check it every minute for a few minutes? If there is a problem with regulating his BP/pulse related to posture, it often helps doctors to have that information.

It's a great idea to come prepared with a list of questions. Is it possible for you to bring a friend or family member who can be with you during the appointment? It sounds like this is a quality doctor from others' experience, but I've found it helpful to bring a partner so they can help describe my symptoms and to remember to ask all of my questions.

When I went to Mayo, my main goals were to:

- Get fully tested for all possible underlying causes for my symptoms. Many different diseases can manifest as autonomic disorders such as diabetes, autoimmune issues, lyme, etc.

- Get fully tested to see exactly how my autonomic functioning was broken. Did I have small fiber neuropathy? If so, was it affecting sudomotor or vasomotor nerves or both? Did I have autonomic neuropathy? How was my GI motility? If my GI tract was slowed (which it was), was the obstruction mechanical (a mass or kinked bowel) or neuropathic (nerves not allowing proper peristalsis)?

- Finally, based on my particular testing results, what were the best treatments available to me?

Best wishes for a successful trip!

If you're not seeing a high-risk OB/perinatologist, perhaps this would be a good idea with your frequent fainting? (Unless you're already seeing one )

Thank you for being cautious regarding the forum rules. Here's the part of the rules that apply to this situation:

It is okay to say you are a member of another organization, website or forum. It is okay to say you use a particular business or product. However, it is not okay to use DINET's forum to recruit members for other organizations, websites or forums. It is not okay to use DINET's forum to promote businesses or products

So feel free to say I use "this" product. You just can't urge others to use it. Thanks!

I can see why you would choose to not take it if you have to pay for it yourself. Yikes!

Martiz, thank you for sharing your experience. We didn't see any need for editing your post. We hope you see improvements soon.

I'll start it as soon as my pharamacy delivers it!

I know lots of folks here who use octreotide because of carcinoid syndrome and it's common for them to say that it takes at least several months for the LAR to maintain adequate symptom control. Thanks for the reminder, though. And thanks for the reminder about the liver enzymes. I had them done this week, but I'm the first patient my doc for which my doc has used octreotide and we wouldn't have known to check those labs.

For me, during the short time that octreotide is working, I get relief not only from the OI symptoms but also from the metallic taste in my mouth, the burning skin, nausea, fatigue, joint pain, flushing,... it's really a great drug. I just hope I get more than 30 minutes of symptom relief with the LAR.