janiedelite

Hi Mack's Mom!

I've never had the issues with blue fingers or toes like you have... just the perniosis that made the tips of my toes purple and my feet were pale blue and chilblained but I could always restore proper circulation by warming them. I believe that this symptom was directly caused by the high norepinephrine levels I experienced while standing. As I've treated my POTS, this symptom has gotten somewhat better. The best treatment, believe it or not, was wearing compression hose. It sounds counterintuitive but the hose probably decreases the sympathetic surge I experience while upright.

Another med that has helped has been paroxetine/paxil.

The best med I've ever used in regards to all of my POTS symptoms, including flushing, is desmopressin/ddavp. Unfortunately this is a med that only works for me for 4-5 hours and I'm only allowed to take it twice a day. While I'm on the DDAVP, ALL of my POTS symptoms are lessened - even the burning pain! It's by no means a cure, but shows that my POTS symptoms are a result of being hypovolemic. Now what's causing the hypovolemia is most likely the vasomotor neuropathy/small fiber neuropathy.

When I got my testing and SFN diagnosis done at Mayo Rochester, the neurologists there said that having mono in 2006 was the cause of my SFN and POTS. He didn't know which one came first (SFN or POTS).

My symptoms are burning feet, face, hands and mouth (that includes a metallic taste). These symptoms worsen with heat, activity, stress or caffeine. Gabapentin has helped along with alpha lipoic acid and, surprisingly, when the desmopressin I take is in full effect I don't have the burning pain. Wierd.

Thank you for sharing Kayleigh's progress!!! I'm so happy for her that she's experiencing success after all of her hard work trying to get better!

Good suggestion, Lieze. Sue1234, I hope you find something that helps even a little bit!

How much compression was in these hose? Perhaps you needs to start at the very lowest compression? Sheer Energy pantyhose was recommended by my rheumatologist when I had a reaction similar to yours after trying on 20-30mmHg hose for the first time. They have minimal compression but still can give a little boost. Over the last few years, I've worked up to 40-50mmHg thigh high hose and believe they are my best treatment.

Maia, was he talking about mestinon? (it's also called pyridostigmine)

Hi Maia,

I totally understand how you feel about having gone through so many tests already. When I went to Mayo, they tested me for any illness that can cause POTS including amyloidosis, diabetes, cryoglobulinemia, anemia, carcinoid syndrome, autoimmunune diseases, acetylcholine receptor antibodies, mast cell disorder, and more. But they also did other testing to determine if the sudomotor or vasomotor small fiber nerves were damaged (sweat-controlling nerves and blood vessel dilation nerves), including a sweat test and a QSART. They also did qualitative sensory testing to test for general small fiber neuropathy.

You're right to want to see if there is any underlying pathology to your POTS. I was so fortunate to go somewhere that would do all of this testing. Commonly, POTS can be idiopathic, post-viral, autoimmune, and diabetes can cause small fiber neuropathy as well. Unfortunately Mayo came to the conclusion that having mono in 2006 caused my POTS, but I've had symptoms that still can't be explained as well. Unfortunately, sometimes if you know the cause of your POTS you still won't have all of the answers you need.

Yes! I'm having a hard time with the weather changing. Last weekend we were in the 90's and this weekend we're in the 50's and rainy. Whenever we have and abrupt transition from spring to summer or summer to fall I experience more fatigue, muscle pain, burning pain, nausea, etc. The only way I know to endure is to get rest, fluids, salt, and avoid stress. I hope that our bodies start cooperating soon!

Hi Maia,

Here's the link where we have a list of docs who treat dysautonomia in various states and countries: http://dinet.org/physicians.htm

It's usually a good idea to get testing done that validates your symptoms and illness for disability purposes and in case you need to get into a specialist that requires prior testing. My TTT was done at Mayo in Rochester. I was monitored the whole time with meds, IVs and qualified staff nearby in case I needed help. Most facilities run their TTTs the same way.

I've tried and failed lots of meds but finally am getting some symptom relief on desmopressin/ddavp. Keep pushing for answers and results! I'm glad that you found DINET.

I had to work up to 10 grams a day. I've read that 1 tablespoon of table salt equals about 2 grams of sodium. I use himalayan sea salt which also contains about 2 grams of sodium in a teaspoon. Salt tablets make me terribly nauseated, but I can drink sodium in crystal light just fine. My cardiologist does advocate the himalayan sea salt and to add EmergenC to my drinks as well for better balance of electrolytes.

Best wishes on your treatment! My mom has a neuroendocrine cancer called carcinoid syndrome. She and I have worked with the founder of the North American Neuroendocrine Tumor Society (www.NANETS.net). They just published the consensus guidelines for diagnosing and treating neuroendocrine tumors. There should be info in there about insulinomas.

I've had this burning pain all of the time since 6/08 but it's definitely worse whenever my POTS is flared up (like with stress, heat, etc).

You should be able to re-work the timing of your midodrine to compensate for you different sleeping schedule. Is there any way you can see your specialist sooner?

I tried lots of meds first and my cardio said ddavp was something else I could try.

To add to Firewatcher's post, I also added DDAVP/desmopressin 0.1mg twice a day to my regimen and it is more helpful than any other treatment I've tried so far. I also have hyperPOTS.

If you have an active infection that hasn't cleared up after a couple weeks, you really need to get it treated. I always have more POTS symptoms during an infection. I tolerate antibiotics just fine since developing POTS.

My hubby and I started trying to adopt over 2 years ago but were told that it would be very unlikely that birth moms would choose us due to my medical history. Also we tried adopting internationally but were told my illness and disability were problematic.

Since then we became certified as foster parents and tried to adopt through our state's foster system. This is not for the faint of heart! We took in a 16 m/o and she stayed with us for 15 months, as well as a 4-lb preemie who stayed with us a few weeks and another preemie who was coming off heroin and stayed with us a few weeks. We hoped to become the forever home for each of these little ones. However God had other plans and they were returned to their families eventually.

As far as my health went, taking care of these little ones was extremely difficult but we want to become parents so badly! Our foster agency only had praises about us, and were thrilled with the one-on-one time the kids received from us constantly. The kids blossomed and were evidence that a loving home does wonders.

We are now taking a break from foster care and have resumed our efforts toward private adoption. Guess what? Now that I've proven myself capable of being a full-time mom even with a disability, other doors are opening and we're sending off our home study to Taiwan within a month! If Taiwan doesn't work out, we have been told by our adoption agency that we would be great candidates for their domestic program as well.

Please PM me for more specifics.

Oh my goodness! I'm glad to see you back and hope that your hubby recovers completely. It's good to hear that Mack is able to start college like a normal kid his age. You all are an inspiration!

Wow Ken! That's so great!!!

This would be a great discussion to have with the doctor who treats you POTS/OI. If you do decide to apply for disability, you'll need that doc to be in agreement anyway and to fill out quite a bit of paperwork on your behalf attesting to your disability. Also, I've found it helpful to keep a symptom log/diary. That way you can track what type of activity you are capable of on a regular basis. If your symptoms are too variable, that is definitely something to keep into account. If you are trying to return to work, try "practicing" at home for a few weeks prior to your return. Try sitting up or standing during the period that you'd be getting ready for work, driving to, working, and then driving home; do this at home and then if your symptoms become too unmanageable, you'll have a more definite answer.

MommaChaos,

I agree with kcmom. My hubby is a Special Ed teacher, so I know a bit about special needs kids through him. If I were you, I would want a 504 plan in place because the teacher and school will be held liable if the for some reason your son is hurt as a result of them not following the 504 plan. It's more legally binding and protects your son.

ChristyD,

You might want to investigate neurofibromatosis type 1. No one should have cysts inside the lining of the nerves (including in the brain). If you have more than a couple of these cysts, a neurologist should be consulted who knows how to diagnose neurofibromatosis. This illness is not terribly uncommon and most good neurologists should be able to help your son get answers if neurofibromatosis is the cause. It may require CT scans, xrays, biopsy (my brother's had to get send to Harvard where they were able to properly identify the tissue as NF type 1), and/or genetic testing which is a good way to confirm or rule out NF type 1.

Cysts outside the nerves are fairly common and usually benign. Any cyst that is growing inside the nerve needs to be investigated. I have a cyst in my C6 nerve root and it was diagnosed as being fluid-filled with a myelogram and MRI. It was expensive but very important to rule out any other nerve tumor conditions! Best wishes!

My cardiologist has me take midodrine on an as-needed basis. Sometimes my BP is high and sometimes it's low. When it's low, you all know what that feels like, and I take a dose at that time (after checking my BP). If my systolic BP is over 120, then I don't take midodrine. I sit most of the day while on midodrine with no problems. Sometimes I even lie down to rest, but I try not to fall asleep. I take my BP after lying down for a minute, just to make sure it's not high. However, my BP is never high when lying down while on midodrine.

This is just my experience. My doctor and I have had lengthy conversations about titrating medication based on my symptoms. I have a BP monitor at home and check it regularly when taking any medication that affects my BP.

You should follow the advice of your doctor and take it as prescribed, but still should monitor your BP and symptoms. Let your doc know of any problems right away.

I have coped with my illness by volunteering. I wasn't sure how reliable I'd be if I had to drive somewhere to volunteer, so I started by volunteering on DINET as their Volunteer Coordinator and now as a Moderator as well. I also helped at my husband's school because I knew I could lie down in his office as needed. Last year, I volunteered as a foster parent (with my husband and other family member's heavy support). We only had 1 child most of the time, occasionally 2 kids. This year I'm going to try to volunteer at a local elementary school. I'm going to help for just a couple hours at a time. The school is 3 blocks from my house, and I plan on bringing my seat cane so I can sit as needed.

It's so hard to be a volunteer sometimes, but it forces me to get moving. I do feel worse sometimes after pushing myself, but this illness can be so isolating and can keep us from feeling productive. I'm thankful that I've gotten my symptoms under control enough so that I can help others.

I went through a bout of very low BP a few months ago. I was caring for our 2 y/o so there was no opportunity to take more than a few minutes getting up out of bed once she was awake! I would keep a midodrine at my bedside and put it under my tongue to make it get into my bloodstream faster. I also kept a 1/2 liter of extremely salty fluids next to the bed and drank them upon waking.

Another thought I had was getting a small office chair or a stool with wheels (like the ones doctors use) that you could use to roll to the bathroom.