Pooling, Eating, Runny Nose, Neuropathy & More

[Victoria]

Would a person experience pain with blood pooling? Can pooling occur anywhere in the body? How can you tell if this is what's happening? I can't lie in bed for more than 5-6 hours without severe pain in my back, thigh or arm. Sometimes I get numb, dead and tingly with the pain, sometimes not. The only way I can make the pain stop is to get up out of bed very early in the morning. Getting up at 3:30 to 4:00 am is not my idea of having a good day.

I've found that I feel best if I don't eat. I've been eating much better lately, but I've been down to 98-99 lbs. before and I'm 5'6" tall. My worst symptoms come on anywhere from 15 to 40 minutes after eating. Why is this? Does blood flow go to the GI tract to aid in digestion? Is this the problem?

I started taking Claritin, Benadryl and Zantac and they have helped immensely at keeping my anxiety and tachycardia at bay. I suspect it blocks my high levels of norepinephrine. Thank you Mack's Mom! But how can I still have an almost constant runny nose on all these meds?

I was screened at the autonomic lab at Mayo several years ago and I have the reports in front of me. How would I know if they checked my Catecholamines during testing by looking at my reports? It doesn't mention anything about Catecholamines: Norepinephrine, Dopamine, etc. at all. Does that mean they didn't look for the Hyperadrenergic form?

What effect would Remeron have on the autonomic system? Would it depend on what form of POTS you have? Is it good for any form of POTS?

I have an axonal and demylinating neuropathy. Is it, or could it be from Hyperadrenergic POTS? No one has been able to give me answers thus far.

Sorry for firing off so many questions, but I'd sure like to know the answers if you have them.

Hope you all have a great day,

Victoria

[janiedelite]

Mayo diagnosed me with mildly hyperadrenergic POTS. One of my most troubling symptoms is burning skin pain. I've told ALL my docs that benadryl is the ONLY med that really relieves this pain. I've tried combinations of other H1 and H2 blockers but for some reason only benadryl helps with this (although I still take zyrtec daily). On really bad nights, I take some right at bedtime and then again 4 hours later, but I'm not sure if this would be effective for your type of pain.

I'm thankful that you mentioned lying down as being a big trigger for your pain. What a quandry! Often I find myself pushing to stay upright as long as possible because as soon as I lie down the burning gets so much worse. Also, stress is a big trigger for the burning pain as well as any dehydration or over-activity.

[Sarah4444]

I wish I had some definitive answers for you, Victoria. All I can say is that I also have lots of pain and I think it is related to staying still/blood pooling somehow. For me it's worst with sitting. I have to carefully balance staying still and moving all day long to minimize pain - swimming seems to be helping too.

I also used to wake every night at 3:30-4 and have trouble getting back to sleep - for me it seemed to be bp falls/anaphylactoid episodes. Whatever it was, I have stopped having this problem after starting doxepin 20 mg before bed.

Eating continues to be a challenge. I have read that eating can exacerbate POTS symptoms by drawing blood to the abdomen, but for me I think it's a combination of that and reacting to some foods I eat. Nalcrom (taken 20 min before eating) seems to help - to learn more about that issue, I would suggest looking at the Mastocytosis Society of Canada website (it's free to join). A lot of people there are far more knowledgeable than I am about food issues and mast cell reactions.

My tilt table test involved measuring catecholamine levels (norepinephrine and epinephrine) and it was extremely high levels of those that led to the hyperadrenergic diagnosis.

I was taking Remeron 15 mg for a couple of years as I got sicker, before I knew I had POTS. I discontinued it because they wanted me off meds to figure out why I was getting so sick. I think with any drugs that block re-uptake of neurotransmitters, a little seems to help some people, but too high a dose seems to cause problems. I prefer doxepin at night at this point, and it was recommended by the doctor I see who is familiar with mastocytosis.

With regard to your neuropathy, all I can tell you is I have had blood work done for autoimmune autonomic neuropathy but I don't know the results yet. Apparently something like 10% of POTS patients have anti-ganglionic antibodies, but I don't know if they know the implications of this yet.

Hope some of this helps a bit, anyway. So glad to hear you have been doing a bit better! I followed the same pattern, and continued to improve after adding doxepin and Nalcrom.

[HopeSprings]

Victoria- I believe in order to check for hyperadrenergic POTS they would take catecholamine levels laying and then standing for 10 minutes... so two blood draws. This is how I was tested and it showed very high standing norepinephrine. How did you get the Hyperadrenergic Diagnosis? I also have pain in my legs when laying in bed at night - not sure why. And I also feel better if I don't eat -- less dizziness. Eating definitely triggers symptoms, especially heavier meals. I think yes, blood is diverted to the stomach when eating, which is normal, but since we already have "blood flow problems" (constricting, dilating, pooling --whatever it is) we feel more symptoms.

Thankful -- what on you burns when you lay down? I have the same problem in my feet. They burn like they are on fire, but only when I lay down at night to go to sleep. I do have lower back problems, so I thought maybe this was causing it, but maybe not?

[Victoria]

I'm thankful that you mentioned lying down as being a big trigger for your pain. What a quandry! Often I find myself pushing to stay upright as long as possible because as soon as I lie down the burning gets so much worse. Also, stress is a big trigger for the burning pain as well as any dehydration or over-activity.

What a quandry is right! I get that burning skin pain too, and it's the worst as I'm trying to fall asleep. Itching starts up as soon as I'm lying still. My bed feels like my enemy. I'm sure glad the benadryl is helpful for your symptoms. It is for mine, for sure. It feels awesome to be able to stand in place for a bit. I wasn't able to do that until now! My other pain is like deep tissue pain on my pressure points when I'm lying in bed. Like if I lay too long on my left side, I have pain in my upper thigh -- the weight bearing areas. That's why I asked about blood pooling.

Everything seems better with H1 and H2 blockers, but they haven't disappeared completely. Stress, dehydration and over-activity are super bad for me. I don't deal with stress well at all; it doesn't take much to get my adrenaline flowing, but the H-1 H-2 blockers have helped immensely.

[Victoria]

Victoria- I believe in order to check for hyperadrenergic POTS they would take catecholamine levels laying and then standing for 10 minutes... so two blood draws. This is how I was tested and it showed very high standing norepinephrine. How did you get the Hyperadrenergic Diagnosis?

Naomi,

I'm not officially diagnosed with Hyperadrenergic or even POTS yet, I am speculating, but at the same time I don't know what else it could be. I had one autonomic study w/ TTT in 2003 at Mayo. Conclusion: "There is evidence of distal postganglionic sudomotor and minimal cardiovagal and cardiovascular Adrenergic impairment. Medication effects (Remeron) cannot be excluded. If clinically indicated, a repeat test off Remeron for 72 hrs. may be helpful." The autonomic lab and my primary internal medicine doc tried really hard to get me retested, but the ordering neurologist said no and overruled them. I'm assuming since they used the word "adrenergic," they tested my catecholamines during the test and I just don't remember. I remember them putting a cup or something on my leg and I had an injection of something, but that's all. It wasn't exactly pleasant.

My urine and plasma norepinephrine have been high twice before, and dopamine was high just a month ago.

Mayo also discovered I have peripheral neuropathy, but the neuro didn't do anything for it. To be honest, he was a bully. . . . I've had two more EMGs since then and it has worsened. I do have all of the red flags for H-POTS and MCAD but none of my doctors have even thought of it. A dear friend of mine (struggling with the same symptoms) was recently diagnosed with POTS and she brought it to my attention. Bless her heart. I would still be scrambling if not for her.

The burning in your feet could be from neuropathy. Mine burned like fire when I first fell ill. They still burn, but now they also sting, feel prickly, ice cold, feel like they're being burned with a match, pin prick type pain, jabbing . . . all kinds of pain. The neuropathy is so bad now I could accidently scald my feet in the tub if I'm not careful because I can't feel how hot the water is. Have you had an EMG Naomi? I think you should probably report this to your doctor and see if one shouldn't be ordered.

Thanks so much for clarifying for me. I will be forwarding my records to Dr. Grubb once I get through them all. Whew! What a task this has become.

[Sallysblooms]

I seem to always say this but please find a doc that can understand supplements. Lipoic Acid Supreme has done wonders for me. No more problems with nerves in my feet. You have to find a doctor that can help with the dose and brand. Supreme is best for me.

[icesktr189]

Can someone please tell me what causes the severe itching when im trying to fall asleep?? I have had this problem way before my diagnosis. My whoke body iches and it drives me crazy at night. I end up taking a cool shower to ease it a bit.