Victoria

Sarah,

Thank you very much for your perspective. The verdict isn't out on the Florinef just yet. I think it makes me feel a bit better, but I can't say that with 100% certainty. Also, my internist is concerned that it may be making my BP go too high, but I think it fluctuates on its own. My BP is usually very low, but it can also get high-ish at times. When it does happen the systolic or top number is high and the diastolic is just mildly high.

Thanks also for letting me know about the taper and that people develop neural hypersensitivity to them. My thought now is to just humor my internist by going to the new EP cardiologist (with H-1 and H-2 blockers on board) and let Dr. Grubb have the final say. Seeing Dr. Grubb is my intent anyway, I just happened to get waylaid by my new internist.

Cheers,

Victoria

I saw my new internist last week and I found him to be rather knowledgeable and very compassionate. After seeing my abnormal ANS test results from '03 he encouraged me to see Dr. Grubb.

He's concerned about my BP and HR being too high, so I have a new EP cardiologist consult and will wear a 48-hour holter monitor. I'm doing well with the H-1, H-2 blockers, but am tentatively planning on stopping temporarily so the cardio can get an accurate reading on my tachycardia, HR, etc.

What do you guys think? Should I go off them for the cardio @ the U or should I wait until I see Dr. Grubb? To be very symptomatic for the holter, how soon before my appt. should I stop taking the H1 and H2 blockers? The thought of stopping is thoroughly terrifying.

One more question: I take a tiny dose of Florinef — do any of you with MCAD take it? Should I be taking it at all? My BP is very high and very low. Are the huge BP fluctuations common with MCAD and Hyperadrenergic POTS, or do most of you have only high BP? This part really puzzles me.

Thanks in advance.

P.S. Had my skin cancer surgery yesterday and the surgeon was able to get clear margins. I'm a hurting unit today, but Yay for me!

Thanks you guys. I'll stay in touch.

How are you taking all these?

I take Claritin and Zantac in the a.m., Zyrtec in late afternoon, and Benadryl at bedtime.

Thank you so much, sue. I did have a wonderful time. I'm paying the price a bit today, I guess I shouldn't have pushed myself as hard as I did. But I'm thankful to be on my feet, even if it is part time.

I started taking them gradually and they help immensely. I'm not 100% and I don't feel consistently well, but wow, what a difference. I don't really believe this is a placebo effect, but I am afraid they will stop working.

How are you doing? Yes, I hope to see you this summer!

Victoria

Prior to initiating Claritin, Benadryl, Zantac & Zyrtec I was unable to remain vertical. An occasional trip to the grocery store etc., but I always had to cut my trip short because I got too symptomatic. I also couldn't stand in one place to to dishes, etc.

I went to the mall with my sister Monday and was on my feet from 8 a.m. to 10 p.m. (not kidding) and I still felt decent by 10:30 p.m., and not too bad the next day! I did have some heavy symptoms here and there while shopping but I was able to recover and carry on.

Could I be experiencing a placebo effect, or does this really mean I have the adrenergic form with MCAD? I've never had a placebo effect before except for the occasional coincidence of "having a good day or two" after initiating a new drug for whatever my diagnosis was at that time. My symptoms always came back after a day, maybe two.

This is almost too exciting for me to comprehend and believe.

It was just the pulse oximetry. How does that make a difference? That eposide I was having yesterday showed my oxygen low with the pulse oximetry - so I slept with my oxygen last night. It made a huge difference. I feel allot better today.

Arterial blood gases are precise, very accurate. My O2 is often low with oximetry, much lower with ABG. But I also have times when I feel like it's really low and pulse ox shows 94-96 which is considered normal. My O2 bottoms out when I'm standing but I don't pretend to understand the dynamics.

I'm happy to hear you got a good night's sleep and I hope your BP and pulse are much better today. I've been taking magnesium for about a year now and I think we may benefit from it. I'm sitting in my recliner and my BP is 116/30, but my HR is only 96. If I were to stand right now I'd get a pulse error because my HR goes sky high and my cuff can't read it. I also haven't had good luck with any of the cardiac meds. It sure would be nice to figure out exactly what works, wouldn't it?

Hang in there,

Victoria

Okay, just had my first ER visit for this illness. I thought I was having a heart attack. My bp was unbealivably high and tachy was awful, I found it hard to breathe (but my oxygen was fine) and I had chest pain.

Dear issie,

So sorry you went through this, it's awful, I know. Especially the difficulty breathing. I also have EDS and the nitro drip has helped a bit in the past. I sincerely hope the storm has passed and that you're feeling much better. BTW, did they use pulse oximetry or an arterial blood draw to check your oxygen? My numbers can vary enormously (oximetry and blood gases).

Hugs,

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.

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.

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

Maybe the website gives info - or the Mayo Proceedings readings on the internet could give clues about it....

They gave us the literature in the form of a brochure weeks before the introductory presentation. The literature was intriguing, even inviting, but the actual rehab presentation did not match the literature. Yes, they would teach cognitive behavioral therapy, but you were not allowed to use any pain medications. I ended up feeling like they were trying to commit me to a drug rehab center, which I obviously did not need. The only drug I was taking at that time was low dose hydrocodone. Insurance typically does not pay for the rehab clinic. Again, this was several years ago, so it is possible they've changed the program.

I take Mag Tab SR (slow release). It's a bit expensive, but it doesn't cause diarrhea at higher doses and you get a better elemental dose out of it. Any pharmacy will order it in for you. Thank you for sharing that great info Julie.

Victoria

I went to the introductory meeting for the comprehensive pain rehab center in Rochester (2003). Despite years and years of severe pain, I had just begun taking pain meds a month prior to going to Mayo. My husband and I exited after a couple of hours of listening to the presentation. Their mission (at that time) was to teach you how to cope with pain sans medication. Attendees were treated as if we had a narcotic addiction? Since the cause of my pain was indeterminate at that time, the pain rehab was completely ridiculous to both of us.

It is quite possible that the rehab center currently takes a different approach? Get plenty of information before you commit. When I was referred they wanted a month long commitment from me and I wouldn't be able to leave the facility for the duration.

Good luck and let us know what you find out.

Julie,

The PDF is: The Mast cell activation disease: A concise practical guide for diagnostic workup and therapeutic options.

I have Barrett's Esophagus, so I have another endoscopy/colonoscopy scheduled in April. I'll see if I can't get my GI doc to look at mast cells. Can't blame a gal for trying!

Thanks so much.

I read every word each of you wrote — thank you from the bottom of my heart. I understand why he dismissed me, and you're right, he is doing me a great service by bowing out. He is a physician I will never forget and will always have great respect for. He didn't have an ego and he didn't try to play "god" with his patients like the others I'd hired in the past. His own father has kidney failure and he won't even let him be a patient in his practice because his father's health issues are too complex. Dr. S is a real humanoid and I understand he did me a favor by cutting me loose. Nonetheless, it stings to be pushed away, knowing I'm starting from scratch yet again. But I know I can do this. Finally, I know for certain I'm on the right path with Hyperadrenergic POTS and I've made enormous strides in just a few days with Claritin, Benadryl and Ranitidine. You are an awesome caring group of people and I don't know what I'd do without you.

With heartfelt thanks,

Victoria

My internist just phoned to tell me he is dismissing me as a patient because my symptoms are too complex for him. I asked if it was something I'd done and he said no. He's referring me to the University of Iowa, but I haven't had any luck with them in the past in regards to my POTS symptoms. I feel like I've been kicked while I'm down (again) with the two skin cancer diagnoses I received yesterday. This is dismissal number 6 for me, I think. I don't know how much more I can take.

Just an update but Mason's Dr. has now prescribed Florinef as the next step in his treatment.

Florinef is a good choice and I truly hope it gives Mason some much needed relief. I'm taking Florinef, but I had to work my way up to the prescribed dose because it caused incredible anxiety for me. I built up by literally taking a tiny nibble a day. I'm hoping Mason doesn't experience this, but if he does, don't give up. The nibble approach works as long as his physician is okay with it.

Keep us posted.

What a wonderful, uplifting post. I am sooooo happy for you! Thank you for giving us hope, and keep dancing, okay?

Thanks to both of you.

Julie -- about the PDF, can you define what they mean by . . . . mast cell mediator release syndrome? I'm assuming this means a history with some type of definitive trigger such as a bacterial or viral infection? Something that directly preceded the illness, yet set the mast cells into action?

What, specifically, would one expect to see at endoscopy/gastroscopy and colonoscopy and the other tests mentioned?

Sarah,

I've had a huge improvement in my symptoms with Claritin, Benadryl and Zantac. I'm happy to hear you have too, woo-hoo!

For the flushing, rash, etc., my dermatologist is ordering two tests that I haven't had drawn before. She knows! She also knew what my triggers were. I feel like I'm moving closer and closer to a diagnosis. But even if a definitive diagnosis can't be made, at least I know what gives me some relief for now, and I'm thankful for that.

I did get a bit of bad news at my appt. I have basal cell carcinoma on my face and probable melanoma on my leg. Oh, heck. It's always something, isn't it?

My normal body temp is around 96.2 to 97.2. Thyroid is normal, so no medical explanation of this phenomenon for me or my son. When we have a temp of 99. anything we are "feverish" but medical personnel don't get it.

Very interesting photos, and thank you for the explanation, Julie. I flush and have uticaria when I'm too warm, ill, or get emotional. The pressure urticaria -- I thought that was a normal occurrence. No? I also have medically documented telangiectasia in various places. I may as well breeze it by the dermatologist, seems like a reasonable starting point. Thanks again for the great info and photos!

I have a dermatology appt. tomorrow morning for some pre-cancers, but I plan to ask her about MCAD. Typically speaking, how often will a dermatologist be educated about it, and what (if any) type of testing could a dermatologist do to rule on MCAD?

Thanks much.