firewatcher

Thankyou, thats very reassuring. I think if they ask me to eat the chestnut i would be inclined to refuse as the outpatient clinic im going to for the appointment is just a small private one without an a and e or itu.

I was wondering if they may need the chestnut to use it for the skin prick test? or to combine with a blood sample???

They probably need it for the testing. Many nut panels are multi-nut and not just one specific nut. I'd be very surprised if any responsible allergist would make you eat a possible allergen on the first appointment.

i now have an appointment with an immunologist for the 21st. In the meantime ive got clarityn and benadryl should i need it.

Has anyone got any idea what i should expect from the appointment??

Ive been told not to take the clarityn for 48 before the appointment and if i can get hold of any of the chestnuts to take them with me!!! this has me quite worried, i hope they are not going to make me eat one while im there????

Has anyone had the skin tests? how safe are they?? can they trigger anaphylaxis? what other tests should i expect?

First, they'll take a medical history and just check you out. If they do a skin test, it is no big deal: they will put some of the allergen on a plastic, comb-like applicator and press it firmly into your back or arm. If you wheal up then it is a positive. They are very tightly controlled and you can call for help at any time. My son is highly allergic and done fine with every test. I have as well. They will probably slather you with antihistamine cream and give you an oral antihistamine before you leave the office. It would be highly unusual to do an in-office oral challenge on your first appointment, but they are even more tightly controlled. Try to relax and get all your medical records in order. The Immunologist probably won't think they pertain to this, and they may not. Mine got a deer-in-the-headlights look when I initially mentioned mastocytosis or MCAD, but he was ready for me on my second appointment and ran the proper tests.

Keep us posted!

I don't have any answers for you, but I get this too. If I walk longer than 15 minutes, my hands and feet will go numb. I actually shake badly during exercise as well. My theory is that it has to do with all the catecholamines that exercise stirs up. Beta Blockers work well for the tremor, but I can't take a high enough dose to take it all away under physical exertion. After exercise, I'll get crazy narrow pulse pressure as well: my systolic will drop, but my diastolic will stay up, so I've had an 87/80 reading before.

Try an extended cool-down and then lie down for a bit after you get home. Once I exercise, I'm done for the day.

My son has had previous anaphylactic reactions to milk and milk products. He is seeing a food allergy specialist at the local Children's Hospital; she believed he was outgrowing his allergy. She recently did an oral challenge on him: he reacted on the first dose (1/8th of 1 teaspoon of milk.) The edited version of all this is that his throat became itchy and he started to panic: they stopped the test. Then they gave him a COFFEE CUP of liquid benadryl. He weighs 75 pounds and his dose was 50mg! I had to continue that dose every 4 hours for the next 24. Liquid benadryl is absorbed quickly and is the first-line drug for allergies, epinephrine is first for anaphylactic reactions. I carry an epi-pen for him, he has one at school and I also have several of the "single-dose" liquid benadryl packets in my purse...much less messy than carrying the bottle!

YES! get an epi-pen!

And an allergist! Throat swelling is a serious reaction (my son is allergic to milk) according to his allergist, who completely read me the riot act after his oral challenge inside the hospital, where his throat just got "itchy." Don't tempt fate, nuts are in a lot of food! Get the epi!

Autumn, welcome to our autonomically dysfunctional family! I am sorry that you are here, but happy that you found us all!

I am shocked that your new doc is as knowledgeable and supportive as he/she is; where did you find such a gem?! Hang in there and use the search function to your quickly beating heart's content. Let us know what your "official" dx is!

We are all here for each other, so be at ease and be welcomed!

Angela,

You are probably getting a triple whammy from the fluid loss combined with the electrolyte loss plus the immune system insult. Try to be good to yourself and hydrate with lots of gatorade-like stuff. There was a fairly recent study on how the flu shot can mess with the autonomic system, so just imagine what the real flu will do! Well, actually you know.

Be good to yourself!

Actually, I'm a little further than square one since I don't need to see a hematologist for polycythemia/leukemia. Now we just have to figure out which one or combination of the three it is! So it is actually pretty good news.

Just an update:

I got my labs today and my serum erythropoietin levels were just shy of middle range. This excludes polycythemia and myloprofliferative disorders (leukemia){EPO level would be low} but it doesn't rule out hypoxia or apnea since it was drawn 6 hours after waking. So it is probably either reduced plasma volume, which should not happen on dDAVP, renal issues or hypoxia...all of which are likely.

Serum EPO reference intervals are 4.0-27.0 mIU/mL

anything lower than or near 4.0 with an elevated RBC or hematocrit would indicate polycythemia.

A level above 13.5 suggests hypoxic conditions.

I, like Chaos, can't lift nearly what I used to (I used to bodybuild/lift weights.) There are also times when my muscles (or nerves) just quit: stairs, jumping (like a trampoline or Pilates reformer with a jump-board.) I want to continue, but the muscle just won't respond and I have to wait it out. The fatigue after reaching that point is very difficult and often my legs will buckle.

I don't have the sleep paralysis/ slow reflexes that you mention.

I have both types of weakness. During PT, I will get to a point in my reps that my brain is telling my muscles to move, and I try but it is like there is no connection---they just won't do it. Then, during the aftermath, the muscles are actually weak and my legs (in particular) will barely support me.

avidita,

I did not have elevated urine catecholamines and I was not tested for blood levels, but my doc at Vanderbilt said that my autonomic responses to the testing (orthostatics, cold pressor, valsalva and paced breathing) were very indicative of hyperadrenergic responses. For hyper-POTS, you can have too much norepi or exaggerated responses to normal levels of norepi, so you could still have "hyper-POTS." I know, clear as mud.

Not every autonomic doc even recognizes hyper-POTS as a subgroup.

I wore compression daily after my initial diagnosis. After two years of regular exercise, I have been able to go without them now unless I am going to be on my feet all day. I'll wear them now for during exercise and when I anticipate a hard day.

"It feels like it's getting harder to sleep the longer I don't sleep."

Unfortunately, this is EXACTLY what happens to us. Norepinephrine is the "waking up" transmitter, so the more you churn out, the less you sleep. I did this for years, it stinks!!!!! It will make you nuts! I find that Klonopin and melatonin help more than any sleeping pill I've ever taken. BB's destroy your natural melatonin, so sometimes, it needs supplementing. Since I am hypertensive, it acts as an alternate, weaker BB, when my Propranolol has worn off. Sonata is one of the weakest/short acting sleeping pills, there are others out there that may work better, as long as you can get your doc to call you back. If you want to do it unmedicated, you'd probably have to stay flat all weekend so that you don't start churning out the norepi. Good luck! Wishing you 12 hours of sweet, dreamless sleep!

I take .125mg in the AM and then again at bedtime. I have tapered down from .75mg-1.0mg daily. I originally tried it for orthostatic tremor, but it helped my chronic daily headache instead. I have tapered off three times now for various testing and can tell you that, for me, it helps the other meds work better. The BB alone did not do as much without it. It really slows all the hyper-responses down and takes the edge off.

Well, my doc was befuddled. He ordered the epo test and it should come back in a few days. If it is high, I get a sleep study to rule out Central Apnea, if it is low, I get a trip to the Hematologist. He thinks that this is all part of "that other thing" that is going on other than POTS.

I got my latest labs in the mail today. My RBC, hemoglobin and hematocrit are HIGH:

RBC: 5.32 M/uL (normal = 3.8-5.1)

Hemoglobin: 15.6 g/dL (normal = 11.5-15.5)

Hematocrit: 48.7 % (normal = 34-45)

Dehydration was not an issue, this was not fasting and was after dDAVP and fluid. This is the highest mine have been and are heading into polycythemia range.

Does anyone else have numbers like this? Did you find a cause? I see my GP tomorrow; I was going to ask for an epo level test. I am not liking what I see since I am wracking up stroke risk factors. Any thoughts?

Julie,

I'm betting your higher RBC count was what was allowing you to keep going with a HR that high. It is the only way that you'd be able to maintain the O2 demand. Now lets hope that backing off improves your immune function!

Julie,

One of the complicating factors to knowing if it is hypoxia is your RBC; a pulse-ox meter will also say max saturation because it is seeing all those red cells. What is your HR doing during exercise? Where does it land compared to your supine, resting value? I'm betting it is still pretty high. I wonder what part your MCAD plays as well, exercise can be a huge mast cell trigger. My PT has told me that I won't find a doc that will be able to help me: most Sports Medicine docs see athletes (normal, super fit/healthy) not rehabilitation cases. What if you cut back 1/2 way? Deconditioning occurs rapidly, so you'd know in a month if that was what was causing it.

Julie, why not go straight to the heart of the problem and see if you can try a Rx for Oxygen therapy? I never had much luck with the body building supplements. If it is tissue hypoxia then O2 should help your numbers. You might also get a creatine kinase test to see if you are really shredding your muscles and the exercise is actually causing tissue damage. Just a thought.

How would Oxygen therapy work? Would I just spend some time every day hooked up, like before or after exercise?

I need your brains, Jennifer. I looked at my last blood work & all I have is serum creatinine and it's borderline high at 1.00. Does that show the same thing as a creatine kinase test? Would muscle breaking down be the ONLY thing that supports my theory? What about prolonged hypoxia from running? I'm certain I'm at 85% or more of my VO2 max as I run. Studies I've read said that causes the immunosuppression in athletes. Whatch'a think?

Thanks so much for your input. I'm not looking forward to an unnecessary BMB. I want to fix this.

Julie

Julie, O2 should correct the hypoxia if it is there. I'd probably do it while exercising. Creatine Kinase is a marker of muscle breakdown/damage. My cardiologist suggested that I have one drawn since I can't seem to make any gains with exercise and have such muscle pains after. My serum creatinine is 1.2+ and has been up to 1.34 so they are wondering how I'm managing to kill my kidneys. Hypoperfusion is the only answer they've suggested, but yours might actually be from increased muscle mass. This is that vague area that no one goes into because it is really sports medicine/nephrology but not in an athletic way, so you won't find a doc who really knows anything about it. Good luck and keep me posted.

Julie, why not go straight to the heart of the problem and see if you can try a Rx for Oxygen therapy? I never had much luck with the body building supplements. If it is tissue hypoxia then O2 should help your numbers. You might also get a creatine kinase test to see if you are really shredding your muscles and the exercise is actually causing tissue damage. Just a thought.

I guess I get to buck this medical trend. I am a professional artist. I have free-lanced/run my own business since before college. Since I have always worked from home, I have been able to almost always control my hours and environment. I think that the physical differences that the researchers are finding in "artistic" brains with respect to neurotransmitter modulation helps me to be more functional with all this. While these differences probably predispose me to dysautonomia (many artists suffer from migraines and have a higher prevalence of Parkinson's) a lifetime of "dealing with it" has helped me to adjust to my worsening dysfunction.

I remember the cardiac nurse who administered my stress test looking at me like I had two heads when I told her we were "going up to 220 (bpm.)" I always was at 190+ on a treadmill, I never knew it wasn't normal! If 140's is through the roof, we must be off the planet!

I know that when I went for a massage, which I was highly anticipating and thought would make me feel better, I felt sick as soon as I sat up on the massage table. I had to sit for awhile, and then slowly get dressed and make it out of the place. Thankfully I had my boyfriend picking me up, because I felt very nauseous and certainly couldn't have driven. So, you definitely aren't alone. I tried two chiro appointments a few years back, and they made me feel pretty horrible, too. I felt better after a couple of days, so hopefully you will, too.

Has anyone tried acupuncture? A friend of mine with POTS/fibro gets relief from that. Feel better soon!

I see an acupuncturist/TCM doc once a week now. On my first appointment with me he flat out told me that he would NEVER insert a needle into me, that it would spark the sympathetic NS. He uses only the Japanese non-invasive needling techniques and moxibustion. I have started the traditional Chinese herbs/medicines very carefully and would not ever self medicate with this stuff! They are drugs like any other and we both have to watch for strange side effects with the Western drugs that I am already taking. I am happy overall with my experience so far since I've come down on my Klonopin and not had the usual increase in headache. As with every other drug, it is careful trial and error. I have had to stop the Chinese medicines twice due to unusual side effects. The whole Eastern concept is VERY different from Western medicine, for one thing, they don't want you on anything longer than a few weeks and never the same thing for an extended period...this is not a "pill to fix it" type of healing. However, POTS fits a lot better into the Eastern theories of illness than the Western medical view.

Sue, there has been some research done at Vanderbilt with Nephrology and POTS:

Clinical Nephrology article

Again, it is something that relates, but in a yet to be discovered way. The kidneys and heart are intimately connected by several feedback loops and few docs even understand that!