janiedelite

Great idea, Katybug! Thanks for sharing this pretty inexpensive option for supporting our necks!

Thanks, guys!

I'm not sure if I even want any more ssri's. It's not just the burning, but I felt agitated, had muscle twitches, fatigue, nausea, flushing, diarrhea. I had all this at the beginning of trying paxil but it was quite mild and I thought it would go away. Then life goes on and I forgot about my initial response to the paxil. All of these symptoms are ones that I deal with on a regular basis anyway, just to a milder degree. I've been on it for 6 months now at 25mg/day and these side effects are quite debilitating at this time. Because of my family's history of neuroendocrine issues and my mom's high serotonin levels, I'm staying off ssri's for now.

Update: I skipped my paroxetine today and guess what... NO burning at all. First time in months. I took it at night as usual and I'm burning like crazy now.

I have a cyst on my C6 nerve root which causes my neck to always be sore, but I think the POTS-bloodflow issues also contribute. I've gone to quite a bit of PT for this and recently found that the McKenzie neck exercises really help me. These exercises should only be taken on after clearing it with your doc, especially if you have an underlying condition. But my head always feels too heavy for my neck too, however doing the McKenzie exercises helps keep the pain at bay which definitely helps with my overall functioning!

Also, benadryl is something that helps settle me down. Carvedilol works well too.

Thanks so much for your input, Julie! I agree that we have such similar symptoms. I also agree that there is a genetic component to carcinoid (although no one prior to my mom has had a problem). But my brother most likely has come down with neurofibromatosis type 1 in his 30's which is linked to carcinoid by MEN 2b (multiple endocrine neoplasia). We've never had genetic screening.

My cardiologist trained under Dr. Grubb and is great. She's willing to try anything. The next appt I have, I'll bring up these episodes and questions regarding MCAD. I'll also talk with the endo about it this week and see if she wants to run tests for carcinoid again (it's been a couple years) and ask about histamine and its role in my symptoms.

One thing that my mom suggested today is to never overeat, which means just eating small bits periodically. In other words, back to the gastroparesis diet. It does help. Anytime I overload my GI tract (fiber, fat, or volume) I get these episodes.

Whatever happens, my mom is probably going to have a normal life span thanks to octreotide and her persistence in advocating for the best medical care for herself. It was too bad that it took her 8 years to get diagnosed, but at least we know what to watch out for. She remembers having symptoms since childhood.

Thank you for bearing with me as I re-hash all of this stuff. It does seem like these past few months have seen an increase in symptoms so I've started weaning off the paroxetine/paxil. It would be great if, as Mayo told me, I have "just" POTS... time will tell.

Thanks, Lieze, I never thought of trying that med!

I forgot to add that taking paxil has seemed to worsen this burning issue somewhat. I'm going to try to wean off of it and see what happens.

Benadryl does help quite a bit, but it's the only antihistamine that actually helps. I take zyrtec day and was taking zantac for a few months with it but didn't have any improvement (I took both twice a day). And to complicate things, benadryl only helps if I take it occasionally. Neurontin has helped with the burning as well.

My mom has this with her carcinoid syndrome and is on neurontin for it as well. Hers has been attributed to excessive serotonin which can cause irritation of the small nerve fibers.

I agree that there is a histamine component to this issue. When I'm burning really badly, my whole body appears flushed. Lots of carcinoid patients use benadryl for this type of burning as well, and carcinoid tumors can secrete histamine.

I did a 24-hr methylhistamine urine test at Mayo which was negative (the neuro didn't know to run the 1-time sample). I had a skin biopsy that I had the derm stain with tryptase and I'm negative for masto.

I do think that there is elevated histamine in my case, but I wonder what exactly is causing it since simply taking the antihistamines just doesn't cut it.

I've had this problem since 2008. There are many things that can trigger my burning skin, burning mouth, and metallic taste including stress, talking, heat, or caffeine. But I've been noticing that after eating certain foods I have between 20 minutes to 2 hours of burning issues. These trigger foods include chocolate, cheese, alcohol, overeating, and sometimes I just don't have any idea.

Along with the burning pain, I also get fatigued to some degree (sometimes sleepy and sometimes exhausted), and have a BM (sorry). If I'm really flaring up, I also notice I get flushed and sometimes get usually emotional.

I do have elevated norepi on standing and have high BP, flushing, tachy, nausea on standing. I'm keeping a food diary. My mom has carcinoid syndrome and I've never tested positive in any of my 5HIAA's, CgA's, or CT scans.

I'm seeing an endocrinologist this week.

Any thoughts????

Just a reminder that even though many of us share similar diagnoses, we all have variable functional ability. Most of us have more or less energy depending on the day, hour or minute! Be patient with yourself.

Keep on truckin'! There are docs out there who will help. My PCP isn't an expert in dysautonomia, but she vowed to send me wherever I needed to go. After a dozen specialists, I finally found a neurologist who was willing to try to help as well and he got me into Mayo.

I went to Mayo, Rochester, where I was formally diagnosed with POTS and small fiber neuropathy. Having a diagnosis from a reputable clinic like Mayo helped in regards to disability and helped give validation to my symptoms.

When I was diagnosed with hyperadrenergic POTS at Mayo (NE 254 supine, 1089 upright), I directly asked the neurologist if the high NE levels were the primary cause of my symptoms. He replied that he believed that my primary cause was autoimmune neuropathy in response to having mono in 2006 (my POTS symptoms showed up 4 months after having mono). He said that my high NE levels was a result of an exaggerated response from my sympathetic nervous system.

They told me to try mestinon and midodrine. Mestinon only caused my HTN, chest pain, etc. to become severe. Midodrine did the same, and so has every other POTS med I tried including florinef and ddavp. I just tried ddavp again today and had to take extra carvedilol in order to function because of the increased exercise intolerance, chest pain, HTN, etc.

I did try clonidine and it plummeted my BP even in tiny doses (domperidone also did this unfortunately).

My cardiologist said hyperadrenergic POTS is the hardest to treat, and that we'd just keep trying. I think the next option is octreotide.

It's been 2 weeks since I last took ddavp and I tried 0.1mg today since I've been so fatigued and painful lately. Once it started working, I only had worse exercise tolerance, tachier than normal, and the chest pressure started. It doesn't benefit me at all unfortunately. Thankfully I have coreg on hand and it counters all of these issues.

I've had lots of MRIs with contrast since getting sick with POTS and I've done fine.

It may be a good idea to take it during the week, early in the day so you can still call into the doc who prescribed it. Also, it may help to have someone with you after you take it.

Keep trying!

Hey, I don't mean to freak you out! She's had symptomatic carcinoid syndrome for almost 30 years now, so it is cancer but it's the slowest growing cancer you can have.

Yes, she feels horrible during her flushing episodes. She gets this sense of doom, feels like she's going to panic or burst into tears, get the big D, BP can go way up (and in some people can drop if their tumors release histamine).

The only thing that helps her is octreotide. Somatostatin analogues like octreotide are the best treatment for carcinoid syndrome.

You also might want to get checked for carcinoid syndrome. These patients get flushing that can make you feel hot and like you are burning. My mom gets whole-body flushes with her carcinoid, but most people flush from the chest up. Also, diarrhea is a common occurrence with these flushing episodes. You can get checked by getting your chromogranin A drawn/CgA. It's a blood test and all major labs will run it.

I took desmopressin 0.1mg twice a day for 2 months. At first, I thought it was a miracle drug! I had SO much less nausea and fatigue and pain... I could even see more clearly and my BP/HR were normal! As time went on, I had less and less positive effect. I even increased my dose up to 0.4mg/day. I kept track of my sodium and it was always in normal range. Finally, I actually started having more hyperadrenergic symptoms while taking it (fatigue, chest pain, tremors, hypertension with any activity, tachycardia, flushing, brain fog, etc).

I'm so bummed. I really was hoping that this would be helpful for me. Does anyone know WHY we have this reaction to desmopressin?

Thanks for sharing that, Mack'sMom! Sounds like a good image of the "golden years"

perhaps you have a motility issue like gastroparesis?

you meet the definition of pots

I get this reaction especially after severe stress: burning skin, flushing everywhere (not just my face), freezing hands and feet that get sweaty, and I'm super tired. What helps me is a benadryl. I'm not sure why (I've tried taking h1 and h2 blockers on a regular basis and never got any more symptom relief).

Also, I've found that if I can get to sleep that I sometimes wake up and my body has "reset" itself and I feel a lot better.

Hopefully they'll re-draw her potassium level. If they don't re-draw, you should call your doc's office and request that they re-draw because it was hemolyzed. You know how it is with doctors... sometimes they're too busy to look at the labs themselves or the fact that it is hemolyzed gets overlooked some other way.