arizona girl

Hey Dani, I'm going to PM you about this. Your post is confusing me. You tried, what???

Hey dani, I'm local too. Me and Bellajulz have been seeing the same neuro in phoenix. Which one are you going to? I think the ?'s are different depending on your symptoms and cause.

As your cause may be the EDS the questions would be different. Our neuro tested looking for small fiber neuropathy, autoimmunity and all those other scary conditions. Are you just looking to treat your symptoms or are you still trying to figure out the cause?

Bella, I just pm'd you let me know if you got it?

count me in this is me too! My BP/HR goes up and then spikes before tanking according to TTT. It was dropping to low BP/HR when I would lay down. Since I've been on labetalol it isn't swinging so much posturally. The thing is I still feel really weak and fatigued when on my feet. Oh yea mine also asks up when I'm focused working on something and or talking.

When you guys say you feel bad when it is high, how exacatly do you feel?

The longer I'm on my feet the more jittery I get and I get a ton of all over body pain, when I finally sit down I get a wave of pain for a minute or two before it passes. I only get the dizzynes, nauseau, ringing ears, palpitation and lose my vision and hearing after my BP/HR spike and then tank, as it tanks and I collapse that is when I get my sickest. So far I've managed to get to the ground before I actually pass out, once I'm down though it's like my legs are noodles and I can't stand back up for a bit.

I just got one this summer. In arizona with heat it has really helped me. No one has ever said or given me a funny look because I don't look sick. I didn't know you weren't suppose to leave them on your mirror when driving, why is that? I knew that I needed to get one when I realized those motorized grocery carts where some thing that maybe I might just need to use. I haven't used one yet, being able to park closer to the door when it's hot has helped keep me from jumping into one, okay maybe not jumping, maybe falling would be a better word.

Hi, I too am wondering why the mucsle biopsy? Are they looking for small fiber neuropathy? A skin biopsy is easier very accurate and less painful then a muscle one. I had the skin one.

Well that is interesting about your digestive problems. I have those issues too, probably due to the the small fiber neuropathy, those fibers effect all your autonomic functions. BP/HR, digestions, mositure production. I'm still working on fixing that problem. Be carefully because if you have ribbon poops (I did too) you can get a rupture. That happened to me of course I had also received injuiries from my seat belt in a bad car accident. I understand about the topirmate. Changing BP meds would be the option there not your topirmate. Just so you don't feel bad, I went thru 9 bp meds before the labetalol. Oh, yes the propran made me go higher too, that is what I was on before the labetalol.

If you were passing out when standing, that is usually low blood pressure and is the more common form of this. The treatment for the low blood pressure form is different then the hypertensive form. You may be getting to low with the labetalol. Again why do you think your hyperandregenic? I was also started on only 50 mg of labetalol and was to work up to 200, well 100 worked enough.

If you are able to get a copy of the actually measurements that were taken during your TTT, not the opinion. You don't have to pass out to have a positive test. Passing out just show you also have syncope. If you had a change in HR of more then 30 points supine to standing that is positive. The same is true if your BP drops. When I had my TTT my BP and HR went up up, was in terrible body pain, then they sprayed the stuff under my tongue I went even higher, spiked and then dropped like a rock and would have gone into assystoli if they hadn't put the table down. That spread sheet they do on you is very telling, you need to read your own numbers.

Okay well now you are just making excuses about spending the money on a BP cuff. I know Target, walmart, walgreens also have cheap machines too. This will be a very useful tool for you, pony up and buy one. Once you get one home start checking first thing while still in bed before you move and then after you've been up a bit and then when ever you feel symptoms. You will be amazed at what your body is doing. Write it down and bring it to your doctor.

Well when I was on it, it stayed to long in my system so when I went to sleep at night I would wake up very hypotensive. It also never got my BP/HR completely down, as I always spike up when I stand. I'm now on labetalol which is working, but I'm still very fatigued with it.

It really does also matter what is happening with you BP when you take this one.

Currently infection free after being sick with a sinus infection for seven months. I was on antibiotics off an on, but no longer. Last course was a 10 day Z-pak that started on the 28th of December (take 5 pills that last 10 days) but the symptoms were before that. I had sinus surgery on the 9th of December, and was on an antibiotic then (the C one I can't remember the name of) for ten days. Then was free for a week.

We only recently found some mold in our home in the air filter my Dad has been neglecting to change and in the water bottles my mom keeps around the house. My room is mold free but apparently though my mom cleans a lot the rest of the house has some issues... We've found them and fixed them. I'm hoping that helps me. But the symptoms are still there and don't seem to have followed the antibiotics or the infections. So I don't think that's it.

I can't check my BP because I don't have a machine and they're too expensive ($50 for a cheap one here). For my meds, check my sig. :3 I can't take the labetalol like that, it's a set dose. I get tachy with the up down as mentioned previously, meaning when I sit in a chair and then get up, go back and then sit, then get up and then sit. Or if I'm out and am looking at something on a shelf, kneel down, get up, kneel down, get up, then I'm going to crash. I get dizzy in the shower because of the heat, yes, but I don't have the time for a bath in the morning. I used to not have those problems before. They've been getting worse. Last night I was laying half-reclined on pillows with the laptop and looking at cute pictures and putting text with them when I noticed I was feeling a little sick. Headachy, tummy sick, and my chest hurt. I was jumpy and panicy for no reason.

Took my pulse, 90+ and rising. I stimulated the vagus thingie by breath holding (I've done that for years because I've always had rythym issues with my heart) and skipped myself. Then I beat back at 72. So I don't know what that was about. I had been resting for about two hours and hadn't moved when that had suddenly come on.

Is that enough information? :3

Well you really need to figure out how to come up with the money to buy a blood pressure cuff, I know Costco has them in the $30 range. Without being able to monitor your HR/BP in your own environment it is going to be really hard to tirate the dosage strengths and your medications. You also need to look at interactions between your medications. Drug digest.org can give you some idea how your different meds and supplements work together, but it doesn't tell everything because everyone reacts different to meds.

Why are you taking burdock root it is a diruretic, makes you pee, which is counter to what salt loading is doing for retention of fluids. As far as the dizzyness, that usually means low blood pressure, especially with the heat of the shower. Perhaps your topirmate also lowers BP and with the labetalol it is bringing you too low. What is the topirmate for?

Another question before you started meds, where you mainly getting hypertensive when standing, mainly hypotensive, mainly tachy or a combination. Also how do you know what was happening if you didn't have a BP machine to tell you what was happening. Why do you think you are hyperandregenic? Have you had a Tilt table test done yet?

All these questions, testing and monitoring tools are necessary to figure out what's going on with you. I had to fly up to see Dr. Grubb in Toledo, he gets many of the hard cases. It appears I am hyperadregenic due to small fiber neuropathy diagnosed by skin biopsy. My BP and HR go up when I stand and talk, I get syncope with a trigger, which is why Grubb put me on labetalol. I go both ways and labetalol does both as well. With hyper form of this your adrenaline spikes when you stand. I have yet to confirm that and will be doing the test to see what is happening with my adrenal hormones next week. If I have a huge jump from supine to standing. Then that will confirm it, even though we are already treating it. Well that's the best I can do for now.

poppet, need more info from you. What infection are you talking about and what is happening with your BP and HR when you are getting dizzy and tachy. What are all your meds you are taking daily?

I always check my BP/HR right when I wake up while still supine, then after I've been up a while and/or when I'm symptomatic.

Heat is one of the things that triggers me, so hot water in the shower or bath can bring on symptoms, even with meds on board. I always have to lay down or sit for a while when I do hot water. However an infection and meds for an infection can also flare symptoms.

Also labetalol has stopped my huge swings when I take it, but if I don't take on time I start swinging again. Some days I have to take it 3 times a day, some days just 2. Even though the swings have stopped I still feel very fatigued, which is a side effect from what I understand. Also I've had more sinus pressure type headaches, which bring on an occasional big sneeze, since I've been on it.

I'll try to help you figure it out, if I can.

Yes, that is what happened to me when they increased my propran I went higher.

You don't need to make a doctors appointment to have this issue addressed. Just call their office and tell them that the higher dose is making your blood pressure higher. They have to address this in a timely manner, because the medication is putting you at risk. They can't help you if you don't let them know. Please don't blow this off because you don't have any paid time off. Tell the doctor this too! They should be able to help you over the phone and call in a new medication for you. Refer them to Dr. Grubb at University of toledo's research work, easy to find when you google him.

Ask them if you can try the labetalol. I'm on 100 mg 2 to 3 times a day. Start with 50 mg and work up. Split the pill. This is what Dr. Grubb told me to do. He has asked me to have my catecholomines checked which can confirm hyperadregenic pots, but he diagnosed me by my symptoms and the medication change has worked after trying about 10 different BP meds before the labetalol. If it works for you then you can be pretty sure you are hyperandregenic, mast cell and net also cause the swings from low to high in BP. Have you ever checked your BP when you wake up in the morning before you move. I would be pretty low and then once up the longer I was on my feet or talked the higher it would go, as soon as I sat or laid down it would drop down again. See if that is happening to you.

Don't feel bad about calling them and telling them it isn't working, it is very common to try several BP meds before you find the one that works for you. Your doctors office will not think this is unusual. Be firm about not having any paid time off left, if they want to see you, they will figure out how to get you in.

Really this in not something that can wait, call them today.

Hey poppett if you are hyperandregenic then the propranlol could be causing the higher BP. Dr. Grubb switched me to an alpha/beta called labetalol because I go both ways, and my huge swings in BP and HR have normalized. I still get fatigued and have other autonomic issues, but I also have small fiber neuropathy diagnosed by skin biopsy. My next step if insurance approves it, they denied IVIG as experimental, is to have plasmaphereis which should pull the antibodies out of my blood. They believe autoimmunity is causing the neuropathy which is causing the dysautonomia. So if it works it's taking a shot at treating the cause not just the symptoms.

I'm not sure what those other drugs your on or for so I can't speak to whether they are involved. Oh and the higher the dose of propan I was given the worse my BP became and my head was so fogged over I was like a zombie!

Hi, well I've been where all of you all are. I've seen Dr. Grubb and a neurologist who diagnosed small fiber autoimmune autonomic neuropathy by skin biopsy causing the hyperandregenic form of pots. Dr. Grubb prescribed labetalol which is an alpha and a beta. It has stopped the huge postural swings in HR and BP. The neurologist recommended IVIG to treat the autoimmunity, insurance declined to pay for it calling it experimental, the neurologist then offered to treat just symptoms which doesn't stop progression, an anti rejection med to dampen the immune system, or plasmaphereis which would pull the antibodies out of my blood. Dr. Grubb explained that there are several categories of pots, some who mainly drop BP, some who mainly go up and some that do both. Since my TTT showed orthostatic hypertension/tachy which spiked even higher causing my BP/HR to suddenly tank and causing me to pass out. So I have the syncope too.

I am not surprised you are having trouble with atenolol. It stays in the body too long so when you lie down to sleep at night you HR & BP drop even more then they would with out it. It also never completely controlled the standing BP & HR. I was also on another beta inderal while it calmed the HR it caused my BP to go even higher. Of the many, many BP meds I've been given the Labetalol has worked the best so far. I've been on it since september. I still am fatigued, especially in my upper arms and legs and I have been having more sinus pressure type headaches, but I haven't noticed anything other then that. It also has done nothing to improve my sleep, digestive, slow moving gut issues or pain which are part of the autonomic neuropathy.

Also Dr. Grubb has asked my local cardio to do the cactecholimine tests. Hope this helps you all as you work towards getting treatment and the proper testing.

Hi SJ, just wanted to make sure you understood that Labetalol is an Alpha and a Beta together. Also if not enough people answer this post you can use the search feature on the forum and search for the terms that most apply to you. There is a lot of info already posted out there on the forum if you search your term. That is what I did and it might be faster then waiting for people to respond. Best of luck to you. If you say were you are from people in your area might be able to recommend doctors. Good Luck!

As I said earlier if you do have hyperadregenic pots, then beta alone won't help as much. When on propranolol at a higer dose, it caused extreme fatigued and I was like a walking zombie. Of course it did lower my HR and BP, but at what cost, I was completely way more ill on it and as soon as I stopped taking it those new symptoms went away. I have not experienced any of this on the labetalol except some mild fatigue at times when I need to walk for shopping and such. So yes your beta can be causing extreme fatigue. I use the shopping cart as my walking aid, but I can manage most of the time without one, unless it is really hot or humid. Your symptoms sound a lot like mine and after many BP meds Labetalol seems to be working for me, though it has only been two months. What else was wrong with your heart, as this may be an underlying cause?

Well I live in the united states, so I can't advise you on the UK, like I said before you could call Dr Grubb's office at the vascular center at the University of Toledo in Ohio, USA. You can google online and get his info and read his research. They may know someone in the UK you can go to. Otherwise search the forum for the other people who live there and read their posts. There are other people on here from the UK.

Hi SJ and welcome. This site has been helpful to all of us and made a huge difference in me getting diagnosed properly. If you go up when you stand and/or talk it is probably the hyperadregenic form of pots. Dr. Grubb prescribed labetalol to me and it seems to be working. I tend to overcome medications after a while, it's only been two months, but so far so good. I was on propranonol which is just a beta, it made my standing hypertension worse. Is bisoprolol only a beta too? You may need a alpha beta, like labetalol or bystolic. Labetalol is real cheap and bystolic is real expensive.

Did you get copies of your TTT test to read yourself? It'd be interesting to know what happened to you. Do you ever actually pass out? I always get copies of everything. We also understand here, the depression of not knowing and the laziness of Docs wanting an easy answer who contribute it to anxiety. Just so you know that while anxiety can be an understandable factor, most people who have dysautonomia do not have a higher incidence of getting anxiety then people in the normal population. I think the anxiety is a normal feature of the frustration of not knowing what's wrong. Also people with the hyperadregenic form of pots, sysmptoms often resemble anxiety, but they are caused by the body's inability to function properly.

It's interesting though how once you know what is wrong and why how that general anxiety just falls away.

Also Dr. Grubbs office in toledo, may be able to refer you to someone in the UK. Hope this helps you!

Hi gift! Dr. Grubb prescribed me labetalol for my orthostatic hypertension. It's an alpha beta and seems to have stopped the postural swinging. I'm still getting hypertensive when it starts to wear off, now regardless of position.

How high are you actually going? I'd get below the 100s on my BP and HR when I was laying down, it dropped when sitting, but not that low. What' going on with your heart rate posturally? Dr. Grubb says I have the hyperadregenic Pots, which is associated with orthostatic hypertension. Mine also goes up when I talk, does yours do that too! Did you have a tilt table test done yet? Mine showed orthostatic tachycardia and BP, with a sudden spike up that caused both HR and BP to suddenly drop causing syncope. So I did pass out, from standing to long. In real life I sit down or get to the ground before I actually get syncope. So yes, you can pass out from standing too long. I seem to be okay if I'm moving, it's the standing that gets me. Also motion triggers the episodes too like on an airplane, on a curvey road in a car, or a ride at a park, and heat and humidity and medical procedures do as well. If I avoid all those things then I'm pretty good Hope this helps you!

Hi every one my colon resection went beautifully. Don't know why I had such mortality issues before hand. My counselor says in was due to the violation of trust between me and that Dr Dirty who molested me during my exam last spring. It made me feel unsafe with all my medical care as a result. Since, the surgery went so well, that is helping me to overcome the violation. Though we all still need to vigilant of our surroundings and speak up with the doctors we let work with us. The funny thing is that I did speak up to this doctor about exposing me, he made me feel stupid, and then went on to criminally exam me. FYI for those that don't know he was arrested two months later for feeling up another patient who felt extreme when waking up from the pace maker procedure he had just done on her. After the arrest hit the news, 17 more women came forward, including me and he was arrested again for the new charges. Oh his name was Dr. Richard Jay Lewis, EP cardiologist, he also saw patients in New York, Chicago and Colorado, hopefully none of you that live in those states had the ordeal of having him as your doctor. The good news is that I am healing!

I can't say enough wonderful things about my surgeon Dr. Cereneka, he is very good at what he does. I was out of the hospital in 4.5 days and was able to drive a week after. Laproscopic surgery is amazing and stunning how quickly you can recover from it. Of course they were all worried before my surgery because of the autonomic stuff, but since they knew ahead of time and Dr. Grubb had put me on the labetalol, they were able to control those issues during surgery. My incisions are so small and just beautiful, I think they will eventually just fade away. I can't tell you all enough how much better I feel. That part of my colon was really making me sick on top of the Pots. Right before surgery my white blood count was back up to 19,000, so I had gotten another infection again, even though I'd been on a double course of antibiotics a few weeks before. Three days after surgery it finally went down to normal. We are still going to keep an eye on it to make sure the infection was from my colon and not something else. I haven't had a fever though since the surgery, so keep your fingers crossed. Not to be graphic, but I'm like OMG is this what it's like to go to the bathroom normal .

I finally got a copy of my consultant notes from Dr. Grubb. In it he is saying that I have perrifial (sp?) autonomic neuropathy most likely from the hyperandregenic form of POTS. He wants my doctor to do the postural catecolomine testing. Jeez I can' spell today! So, I think we finally have the proper diagnosis down. I'm going to have to fight for the IVIG, my insurance United Health Care has denied it saying it is experimental for my diagnosis. It is actually FDA approved for polyneuropathy, so I wondering what is the difference?

Inspite of that I'm not going to let it take away from my happiness of recovering from a sick colon. I am so happy and god has been so good to me!!!!

Bella, Did you get into see Dr. Levine and is your insurance going to pay for it? Love to hear about your appointment. My UHC insurance took forever to decide it was experimental and turn me down for treatment. Looks like I'm going to have to fight for it.

What do you think about Ivig and your diagnosis?

AG

Keep me in your prayers! Hope we are doing the right thing taking this sick colon out! Hope I wake up! I'll be in 4-14 days depending on how it goes. I'll see if I can get my husband to post how I did. I don't think I will be near a computer for a bit.

I'm so grateful that we have this forum to support each other. Keep taking good care of all the newbies! thanks again, Michele

Hi everyone thanks for your thoughts, prayers and suggestions.

Those of you that used the boots. What are they? Also why did they use them on you. What are your primary dysautonomia symptoms? My dysautonomia symptoms where standing hypertension and high heart rate and hypotension and low heart rate when lying down. As well as the motility, temperature, and pain issues along with triggered hypotensive drop episodes or near syncope.

Autonomic neuropathy, NCS and hyperandregic pots have any experience getting through a major surgery? Mostly, may I kindly ask you to pray for me on friday that the surgery is uneventful and that I come through it and recover quickly and that it is heals well, so that I have one less medical issue to deal with. The surgery is at 10:00 am arizona time. Arizona time of this post is 1:15 pm.

They are going to remove a portion of my sigmoid colon due to the fact that it popped last year 9 months post car accident, and healed without surgery, I now have had a recent reinfection with symptoms and they don't want to wait until it pops again. I thought it was going to be next week and even though it seems like it has taken forever to finally get it scheduled, I mentally wasn't prepared for it being this friday. I have endometriosis and PCOS so things may also be stuck together.

I guess I'm having the hardest time dealing with the concept of mortality, with any surgery it is something that is sitting there like a red elephant in the room that no one wants to acknowledge. Had I had the surgery last year I might not have survived because my dysautonmia was still undiagnosed. So, the good news is that we know that now and can work around it. Also the labetalol that dr. gubb prescribed seem to have stablized my BP and HR, just in time for surgery.

So any advice or words of wisdom from those of you who have made it through a surgery, inspite of the dysautonomia, I welcome them. I'm so glad we all have each other to turn too! You all have been a blessing!

Hi, I had all the same testing, to rule out MS and such. My emg was normal too. After the positive Tilt Table, which I assume you had and after the neurologist did the emg, I knew enough to ask about small fiber neuropathy. Another neurologist did a skin biopsy and sure enough I had small fiber neuropathy. See if you can find someone in your area that does this testing because along with it they should do a bunch of other tests to see if they can figure out what is causing in it. Dr. Levine at phoenix neurology is the arizona doctor for this. You can go to their web page and read up on a bunch of disorders associated with it. Maybe you will recognize your symptoms.

Also B1 deficiency's can be associated with these type of symptoms too! If you do a search for small fiber or autonomic neuropathy you can read those post too!

AG,

Do you mind me asking why they have to remove part of your colon? I have a lot of colon difficulties, also.

Thanks,

Jana

Hi Jana,

Well it appears to be diverticular disease to make it short. The longer story is that I had been having a lot abdominal pain and bloating. Had a full work up 2 years ago everything looked good, told had a colon of a 30 year old, only had an iffy hida scan, told it was IBS or short for "it's bull ****" we don't know what's wrong. Choose not to get gallbladder out and follow-up hida was normal. Then I was in a high speed freeway accident oct 07, got seat belt injuries. Then the symptoms over the next 9 months got really bad to the point I was pooing burning yelllow bile that looked like pee, my intestines just were painful sour. Then my colon would shut done and nothing would move. Then last august after another episode my colon popped while trying to go to the bathroom. I could feel the air moving back and forth trying to get out and then pop. I ended up in the hospital on IV antibiotics and only by some miracle avoided emergent surgery. The last year has been spent trying to figure out the autonomic stuff, so if I needed surgery, I would survive it. It's been flairing up on and off for the last year. Oh and after the rupture when I reviewed my medical records my primary care doctors office never informed me that I had an elevated WBC or that Diverticulosis showed up on the CT two weeks after the accident. So I basically had an infection in my colon for nine months.

Most recent I was having low grade fevers again, had my white blood count checked and it was elevated. They did another CT and that along with the pain and other symptoms, showed I was having another attack. So, after one rupture and another attack, it is too risky to leave that section of my sigmoid colon in, because it could pop again at any time. I've had too courses of antibiotics already this month. I do feel better on the right antibiotic, can't take the cipro or levequin, they caused terrible body pain, and shouldn't be taken if you have the autoimmune autonomic neuropathy that I have.

So what are your symptoms and have you been worked up for diverticular disease?

Honestly, I don't think they will know fully what's wrong in there until they go in. My rupture was a free perforation with no abcess, I also have endometriosis and PCOS. My surgeon is going to have an endo surgeon there in case they find a lot of endometriosis. I'm scared to have the surgery, but I just can't stand the pain anymore.

Your symptoms sound a lot like what happens to me right before I get near syncope. Have you checked to see what is going on with your BP and HR when this is happening? I mainly get orthostatic hypertension and high heart rate when I'm up right, but right before I drop I will get very ill, sweaty, ringing ears, nausea. Dr. Grubb has put me on labetalol, it's a alpha beta. It has made a huge difference in my erractic BP/HR. I was on clonidine and it was like my body kept wanting higher and higher doses and I felt awful on it. Proprananol gave me higher BP. Not knowing what is happening with your hr and BP and not knowing what tests you've had makes it hard to give you advice. I have been having gastro problems and will be getting part of my colon out. My digestion has been better too since cutting out most dairy. I'm going to get food allergy testing after the surgery. Have you been tested for food allergies or mast cell disorder yet

hello all!

GI issues appear to be one of my biggest autonomic issues and have been for a while now. I know Ive posted on this before. but im incredibly frustrated, as i feel just horrible, I'd say about 90% of the time when I eat or drink ANYTHING I get sick from it )ie nausea ,vomitting, and or diarhea) allmost instantly.

Its like the moment food or water go into my mouth, that is all it takes to set me off. Ive tried diet changes, doing liquid diets, when symtpoms are so severe that solid foods arent even worth trying giving the issues it causes....cutting out meats, cutting out fatty stuff.. watching the sugar/carb intake. I cant seem to win no matter what i try.

my stand by meds dont even thouch the symptoms anymore...

So far testing has come back normal, so this adds to the frustration...

I have days where immediately upon standing i throw up, this past weekend I atempted to go to the grocery store, and i got so sick in the store, with horrible gut pain, and this sensation that my stomach was turning inside out, intense nasuea, and inevitably diarrhea. Complete with chills, goosbumps, facial flushing, muscle/legs weakness, and uncontrolled shaking.

I bought my water and left....and spent the rest of the night feeling yucky..( no i didnt have the flu..i just get like that)

Do any of you get such a sudden onset like this? have you found anything that helps you???