janiedelite

HIS- when I was on midodrine, my heart rate was much slower than normal. I would often stay in the 40's with dips in the 30's. Normally my resting heart rate is in the upper 50's. Just my experience. Hope you get relief!

I also have recently stopped eating any type of sugary food and feel so much better for it. There are quite a few folks on DINET who avoid dairy products as well, but I seem to tolerate dairy just fine. When I eat sugary food, I have so much more fatigue, pain, chest pain, tachycardia, flushing, nausea etc. that will last sometimes 2 days after I've had the treat.

Beriberi is most often caused by a vitamin b1, thiamine, deficiency.

I have hyper POTS with orthostatic hypertension, but the hypertension is an overreactive compensatory response for my severe pooling. So salt loading is beneficial for me.

Emma246, this would be a great question for one of our medical advisors. We publish a column in each newsletter in which DINET members get their questions answered. If you'd like to pose this question to one of our medical advisors, go to this link and follow the instructions: http://www.dinet.org/q&a.htm

I saw my cardiologist yesterday and she's going to start me on 20mg LAR every 4 weeks. We'll see if a longer-acting version gives me longer symptom relief. This is the last med I can try so I'm keeping my fingers crossed.

Issie, your description of this forum is the reason that I volunteer for DINET. Thank you!

With the swelling you're experiencing, do you think you could be having some type of abcess or infection in your gums/teeth?

Cath_UK, best wishes on getting help for your pains. In my experience, not every physical therapist (even using the same method) is equal in expertise. Sometimes it takes a lot of trial and error before you find something that helps.

I have a friend who was on zoloft for nearly twenty years. She weaned off over 3 months a couple years ago. For almost a year after quitting altogether, she was having episodic orthostatic hypotension. She didn't have any hypertension, though.

It may be a good idea to check your BP occasionally. Over time, midodrine increased my BP too much.

I have had such bad pain that up until December, I couldn't flex my neck forward at all without having severe radicular pain in my arms. Keeping my neck somewhat extended at all times and avoiding laying down was the only way I could manage anything.

In December I started seeing a physical therapist who specializes in myofacial releases (the Dr. John Barnes technique). I've been to over 100 PT visits in the last 5 years trying everything from exercise to the Mckenzie technique. I only got worse. Even massages made me more painful in the long run. I've been in 2 bad car accidents which caused hip/neck/back issues, and I often sit or stand slouched because of BP issues. Since starting with this PT a couple months ago, my chronic headache is GONE, I can sit and read a book or look at my phone and not have a migraine afterward, and I wake up at night half as many times due to pain. This technique is very gentle. The PT is having me do some VERY mild stretching or strengthening at home, but knows how hyperactive my sympathetic nervous system is and doesn't want to cause any more tension.

My cardio doc also feels that I may have underlying hypermobility, which hasn't been exacerbated at all by this PT. I do often get an exaggerated sympathetic response during my PT sessions (flushing, high BP, tachypnea), but it's very transitory.

I was on a combined pill and only tolerated one dose because of severe nausea, vomiting and fatigue. I did tolerate the nuvaring a bit better (still had those side effects, but I could work through them), the OB/GYN thought it was because the method of delivery bypassed my GI tract. Later, I was put on clomid (straight estrogen) for infertility issues and felt better than I'd felt in years for the first few days I was on it. After that, it was like taking a sugar pill, POTS-wise. My mom can't handle any type of progesterone without having the same issues as me.

Can you call the insurance company and see if they can rush the prior authorization? Perhaps there is a back doctor that you could make an appointment with, so that when your MRI is done you can get right in to see him/her? Getting the toradol a second time may have been not just for the pain relief, but for its anti-inflammatory properties. Would your doctor be okay with you taking ibuprofen regularly to help with the inflammation?

For those of you who recently submitted questions to the medical advisors, please know that you must follow the instructions on the Q & A Confirmation page prior to submitting your question. Specifically, include your first and last name, an email address and state of residence. I can't submit questions to the advisors without this information. The reason we require this information is that the advisors may want to contact the questioner and they can't do so without this information.

I never include a questioner's last name or email address in the newsletter in order to maintain their privacy.

Tennille, I think that either an ENT (ear, nose and throat) doctor or a neurologist would know how to diagnose trigeminal neuralgia. The treatments would be the usual treatments for neuropathy: pain meds, neurontin/lyrica, antidepressants, etc. There are lots of different meds that can be tried for neuropathic pain, if it ends up that you have trigeminal neuralgia.

Mayo wouldn't do testing on me unless I'd been off all meds that affected my nervous system (even benadryl) or cardiovascular system. I had horrible vomiting and headache the night prior to testing and the only thing I was allowed to take was tylenol. Can you call the doctor's office you'll be working with at Mayo and ask their advice?

Here's DINET's dysautonomia brochure (it's on the home page): http://dinet.org/images/DINETservicesbrochure2.pdf

Here's Dr. Grubbs guide to POTS diagnosis and management: http://www.dynakids.org/Documents/pots_article2.pdf

Also, DYNAkids.org has lots of brochures. They're geared toward helping patients who are kids and teens, but still very informative.

I talked with Rachel about the DVD's and we will be able to order more in the future. But right now there are still a lot of details to work out surrounding our change in leadership and getting the finances to order and mail more DVD's. So we can't order more DVD's yet. Sorry!

The moderators work hard to make sure that the DINET forum is a safe place for everyone. Recently we've put in a lot of hours editing topics that were worded as medical advice. Please remember to use a kind tone and share your opinion as "In my experience," "In my opinion," "This has worked for me," or similar wording. Posting medical advice opens DINET up to liability. Also, please understand that while you can learn about potential diagnoses and treatments available, the DINET forum is not the place to obtain medical advice specific to any condition you may have. If you need clarification, here are the DINET rules pertaining to medical advice:

Medical Advice

The content of DINET's forums is in no way a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and a physician. Please keep in mind that treatments that help one patient may be detrimental to another. Members should never try any new treatment without first obtaining a physician's approval.

Clarification to "medical advice:" It is okay to suggest someone seek professional medical advice and treatment. It is okay to say that you had a similar situation in which you were treated with x, y, and z medications. However, it is not okay to tell others what to do, such as, "You should take x, y, and z medications."

Participation on DINET's forums signifies that you agree to abstain from giving medical advice to other members.

The moderators work hard to make sure that the DINET forum is a safe place for everyone. Recently we've put in a lot of hours editing topics that were worded as medical advice. Please remember to use a kind tone and share your opinion as "In my experience," "In my opinion," "This has worked for me," or similar wording. Posting medical advice opens DINET up to liability. Also, please understand that while you can learn about potential diagnoses and treatments available, the DINET forum is not the place to obtain medical advice specific to any condition you may have. If you need clarification, here are the DINET rules pertaining to medical advice:

Medical Advice

The content of DINET's forums is in no way a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and a physician. Please keep in mind that treatments that help one patient may be detrimental to another. Members should never try any new treatment without first obtaining a physician's approval.

Clarification to "medical advice:" It is okay to suggest someone seek professional medical advice and treatment. It is okay to say that you had a similar situation in which you were treated with x, y, and z medications. However, it is not okay to tell others what to do, such as, "You should take x, y, and z medications."

Participation on DINET's forums signifies that you agree to abstain from giving medical advice to other members.

Bunny, perhaps the new surgery center was not attached to a major hospital? If you have a serious underlying medical condition, most anesthesiologists will want your surgery to be performed where there are lots of other experts and an ICU if necessary.

Tennille, I don't have any more advice to give. But your pain sounds horrible. I just wish you could get some relief.

Thanks, Corina. Right now I'm just happy that I'm finally tolerating a medication fairly well, other than the usual side effects. I am the first patient that my POTS cardio has ever prescribed this medication for, but I'm hoping she'll be comfortable with continuing at a higher dose or more continuous method like the LAR.