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Everything posted by CharmedLinz

  1. Mine didn't use to be constant, but it has increased to being constant, especially in the car, which is why in Feruary I was told "NO MORE DRIVING". I hadn't drove for about 2 years or so because I didn't feel it was safe. But now I won't even be able to renew my license. Sad, but I know it's not safe for me to drive. I also have perfect eye-sight. My Neuro Opthamologist has done every test she has available and the only thing that has shown up is the worst case of dry-eye she's ever seen (though I don't feel it). The tear drop test, Schirmer I think it's called, I produced 1 drop, she was shocked. I do also fail the field of vision put your head in the bubble and beep for the lights, I fail that. But my vision is actually 20/20. My optic nerves are fine too. Sunglasses do make it worse, but so does bright light, so I suffer with sunglasses. My house is so dark my Mom can't see anything without turning on a book light. If I do go outside, rarely these days, for a stroll around the yard, it's usually at dusk when it's not so bright. When my Mother takes me to the store or such, I stick the glasses on and shut my eyes so I'm not in a constant adrenaline state like you said. Then when we get to our destination I just deal with the extra nausea for a few more minutes. Thank goodness the store is only 5 minutes away. Going to Arizona back in Feb was miserable because I couldn't keep my eyes shut without getting sick and high speeds on highways make the 3-D feeling a million times worse!!!
  2. I'm wondering who else can identify with this symptom. I'm sorry to start a new topic but I couldn't find the post from a few days ago. Katybug mentioned that she and I seem to have a lot of symptoms in common. I have always had an extremely hard time describing to anyone my vision problems, and other than my PCP saying "NO MORE DRIVING"..... duh!!! No one can really figure out why. Maybe I haven't been giving them the right description, but Katybug nailed it. It is EXACTLY like wearing a pair of 3-D glasses all the time. In bright light it's way worse and it seems the ground you walk on is moving and wavy. For the past 2 years with my Mom driving I've been a horrible side seat driver. My depth perception is so off that I'll blurt things out... watch out.... car swerving into our lane.... or your going to hit the curb. Since before I had to stop working I worked........ as a driver....... I'm pretty picky. So thank you Katybug for putting it into words....... my Mother now understands why I'm freaky. Anyone else.......... 3D glasses feeling???
  3. Hi Gals, Thanks for the responses. Dana and I have chatted AI in the past. The strange thing about these labs is they are creeping consistently higher, and I'm on Cortef replacement. Not as much as I'm supposed to be on (20mg) but I'm on 10mg a day total and trying to work up, I don't tolerate it real well. This is kind of in the same weird pattern as my histamine levels being in the 3500 range even while on horse sized doses of H1 and H2 blockers for Mast Cell stuff. LindaJoy....... I think I've read that you've been ruled out for Carcinoid??? Right now they are running me through all the tests they can for that and Paraneoplastics because I have all the markers it seems for Carcinoid but the scans are clean. High Histamine High Seratonin High Insulin Now along with this Eosinophil stuff they did a Chromagranin A as well and my level for that was 45. That was within range but when I looked up what exactly it is I found several articles saying that levels over 20 and 30 should be suspect of preliminary disease. Anyone else had the Chroma A test? What was your level? I did find the CURED foundation and printed some things off. I found it very interesting that a finding listed was thickening of the abdominal wall due to scar tissue. When I had my surgery last year they found that my entire abdomen was filled with fibrotic tissue and adhesions. So that's making me wonder if this is all something to do with Eosinophils, at least the allergic part. My IGE has been high in the past but this time was normal. Oh and I should state that my Eosinophils themselves were 13. It was the ECP, Eosinophil Cationic Protein that was 47. From what I'm reading and understanding the ECP is degranualtion of actual Eosinophils. Another similarity to mast cell degranulation I'm suspecting. Oh my aching brain..... UGH... too much too much
  4. I can't really help with the frustration as I feel it myself most of the time. My biggest anxiety is caused by waiting for bills to show up in the mail, knowing that I cannot pay them and will have to fight them..... long story but I've been on Medicare now since December and I'm not sure what to expect from where or who.... I hate going to the mailbox. I see Watkins at the Birmingham clinic mentioned and will tell you what I can. My Cousin was diagnosed there with POTS as a 14 year old on the verge of death, this was 15 years ago when even less was known than is known now about all of this. When I started showing similar symptoms 3 years ago I called and they were more than willing to see a family member. However at the time my insurance was covered by my state and I could not see out of state docs. So the Clinic told me what to have done locally which was, a TTT which I'd already had, a halter monitor for at least 48 hours, a stress test, and an echo. They would just charge for the appointment which turned out to be cheaper than seeing my local cardio and the Doc spent 3 hours with us initially. When we left we paid the bill which was between 2 and 3 hundred, but they also took my insurance info and said they would try and run it through. Not sure how they got it done, probably because they were able to give me an actual diagnosis to go with the local testing but they got my insurance to cover it. This was in 2010. I went back last year for a check up which included them doing their own echo and stress test. Asked them to try my insurance again and if not we would make payments. Again the bill was cheaper than here. The 2 tests and appointment were somewhere around $500 I think. It took them a few tries but it got covered. I love the staff and Dr. Watkins. There are 2 female Docs I beleive also. They will do TTT's, Echo's, and Stress Tests right there in the office. As far as I know the do NOT do Qsart or sweat testing or any of the Valsalva testing. I can't speak for the other Docs there but Watkins will only deal with the "heart" part of this..... period. He follows Grubbs protocols and encourages endocrine support for thyroid testing because to date he quoted to me that nearly 70% of their patients end up having some type of Thyroid problem. To remain under the clinic's treatment you have to be seen in their office once a year. This meaning if they need to give you prescriptions and be your treating physician. The only other drawback is that the Doctor I see there, not sure about the others, has a strict rule about not verbally communicating with your other physicians, not enough time. So you get your workup and notes. You can contact the nurses as a patient as you need to and they respond quickly by phone or email. Oh and while it is about 8 miles from the clinic there is a very good longterm "hotel" that's only around $60/night. Though both times I've been to the Clinic everything has been done and scheduled in one day. But we travel from 2 days away so a little down time and visits with family are a must for us. Hope this info helps somewhat. Moderators if I've said anything not allowed feel free to edit, my brain was having trouble staying away from the no-no's.... not sure if I caught them all.
  5. I take it pretty much daily, only at night though, but it doesn't sedate me much at all anymore. The HCL version, which is the tablet, I don't tolerate well, I don't think I break it down correctly in my system. The Pamoate version, which is the capsule, I tolerate very well and in fact this is the only thing that will break through when I'm having one of my horrible episodes where I'm itching and twitching from the inside out. Thankfully this doesn't happen too often, I think it's true anaphalaxis when it does. When this happens I take 50 of hydrox and sit and try to breath through the panic and it works in about 20 minutes and then I'm relaxed and out in another hour. From what I know of this drug from the animal world as a past vet tech and past horse person is that's usually well tolerated by most living things (LOL) but it is sedating. I had a horse however that for no reason would break out in hives and sweats and only a massive dose (equal to his weight) of hydrox would get him out of his episode. Looking back now at his episodes it very much looked like exactly how I feel (and prob most of us feel) during those horrible allergy episodes.
  6. My One constant lab finding over the past 3 years has been a HIGH Eosinophil count on my CBC. It's also continued to creep up higher and at last count two weeks ago was 13. All my Docs have noticed but no one is real concerned about it because it can be caused by both allergies and Adrenal Insufficiency, to which I have both. However when I was googling it some other more critical stuff popped up including some types of Eosinophilia ending up causing some fibrosis and even myocarditis. I don't jump to conclusions easily but it also showed up while doing more Mast Cell reading and also while reading about the Complements. So when I had my blood drawn last week for all the newest ideas and Complements (thanks Ladybug) I had my Doctors add on a urine Eosinophil which came back clean, so I'm not wasting them into my urine, that's good. I also had them from an ECP, Eosinophil Cationic Protein. That just came back today and is quite high at 47, my lab range is 5-19. When I look up high levels of that it is mostly coming up on searches for people with Asthma, which I do NOT have, not even in the slightest. But, finally an inflammation marker that is high on me, no other ones have been. I'm still waiting on the Complement Tests with the "A" after, they take awhile, but my basic complements were fine. So does anyone else have High Eosinophils and/or the ECP???
  7. Great topic and information. I have a request......... I can't seem to find Dr. Afrin's email, can someone PM it to me??? Or if one of you talks to him frequently can you ask what his policy is about accepting out of state Colonoscopy Blocks and Slides for testing??? I don't think I can get out there to see him but would gladly send him my samples if he would accept them for testing and tell me how to get them to him. Thanks!!!
  8. 4 of them, 2 with contrast 2 without. I have several deep white matter lesions that are unexplained. I have a mild Chiari 1 Malformation, deemed to minor to do anything about, except avoid spinal taps. A couple venous anomalies. I do see a Neuro-Opthamologist who has been unable to do anything. Everything on her end is NORMAL. Except for the worst case of severe dry eye that she has ever seen. She feels this is due to something autoimmune and/or the dysautonomia because I can't feel that I have dry eyes, they don't bother me at all as far as dryness. But she thinks the dryness is causing some of my vision problems. I am unable to drive because my depth perception is gone. I have a constant haze over my vision, kind of like looking through a window that appears clear but you know there is a piece of saran wrap over it. I get sparks, lines, ghosts, double images. I can't read anymore for long periods at all because black on white distorts, same with the computer, I have my monitor turned on low and even that doesn't work well. I am EXTREMELY light sensitive. I've also seen a Neuro-Tologist (spelling wrong, brain fart..... fancy ENT Doctor) who did all the Vestibular testing on me, caloric testing, videostenography. He said I have an central inner ear deformity caused by the dysautonomia or autoimmune or both most likely causing these problems and the Vestibular can cause the vision problems or vice versa. He also diagnosed 2 different types of Nystagmus, but not a cause for them. So the eye doctor can treat my dry eye, but nothing else because the problems aren't coming from my eyes, I see 20/20 and my Ocular nerves are great too. All the vision stuff is a result of other things. I believe Vestibular, connective tissue, dysauto, neuropathy. As when I'm having my worst eye symptoms my mother says my Nystagmus is really bad, and it just continues to intensify. So while I'm not happy with either of those Doctors and I don't see either on a regular basis, I do feel it was worth it to see them. I especially feel the Vestibular testing was necessary and may be of use in the future. Hope some of this helps. I do stumble over words and such when I'm very symptomatic. Try looking at your Daughter's eyes when she is having a hard time and see if they look normal..... pupils right size, nystagmus (jumping around she doesn't notice), droopy eyelids. You kind of have to do it on the sly though. Once my Mom tells me my eyes are bad and to look at her and focus I can get it to stop usually, which is turn helps the dizzies and calms things down. Funny about that is during the Caloric testing, they do verbal tests and to get your dizzies to stop they have you focus on one point on the wall and it stops the test, the dizzies and your inability to find words, that's how they diagnose a vestibular problem, that's one part of it anyway.
  9. Doc was intrigued with the info I took him on Complements, all from your posts and links I might add. He really didn't know much about them and after giving him the info, I left the lab today with labs drawn for Complements 1-9, CH50 and C3A, C4A, and C5A. Will let you all know the results. I think this may be my last large array of labs, just too much stress trying to get them ordered right, covered, waiting for a bill if they weren't. Not to mention, Fasting, staying off some meds, and leaving the lab with 24 tubes of blood less in my body. 24 tubes, new record for me. As usual they were shocked that I wasn't even woozy. Not woozy just dehydrated and I think have drank my weight in coconut water since.
  10. Well I don't want to speak for everyone because it's not all of us, but there are quite a few people here who simply don't pass out. My BP dropped to 40/17 and I was crying and going black and felt like I was seriously going to vomit (good think I had fasted for 14 hours), and was trying really hard not to let anything out the other end either (TMI but when I get close to passing out I always feel the need to pee). I have a really close friend on this forum who has been on what seems like a million tilt tables and has never passed out and she's had Doctors tell her they are trying to get her to pass out. I know her BP had dropped to where they could NOT get a reading. I'm sure she will post. I think some of us.... our bodies are so used to compensating that it can adjust and we don't actually go black. The nurse that did mine was in Cardiac Care for 30 years and said she had never had anyone drop that low and not pass out, and I was in the CCU for 3 hours while they stabilized me. My body does the same with getting blood drawn. I know I have really low blood volume and I pool really bad, but when I get my blood drawn even fasting I'm rock steady. The techs that draw me can never believe that I can get 20 tubes drawn and not even be woozy. I bleed really slow, and they release the turniquet to keep the blood from hemolizing too quickly and it takes forever to get those 20 tubes because of low BP, and I'm extra tired the next couple days, but I don't get woozy at all. The most I've ever had drawn was for a 3 hour glucose test with other stuff added with checks every 30 minutes. Other than the glucose solution I had nothing and over that 3 hour period I had a total of 47 tubes drawn and was just fine. All that being said, I am rapidly going downhill for some unknown reason and in the last 3 weeks have found myself unconscious in the shower twice, thankfully I was sitting on my stool so no harm done except cold water. And today I went for a stroll in my backyard to see my flowers, with my Mom luckily, because it was 80 here today and all the sudden I was slumping down slowly to the ground. Didn't go completely out but that have NEVER happened before to the point where I went down. I have NO idea what would happen on a Tilt now, but they'd have to pay me good money to get on one again. Honestly I'd rather have a spinal tap than that horrible feeling on a tilt that you can't get away from.
  11. Hi Naomi--- No sorry not New Jersey..... but New Mexico....still has a NEW in there.... LOL. I have a great Primary Care but the rest of the Docs here are mostly iffy. Good GI and good Immunologist. We are kind of backwards in medical care here. I've been told point blank by Doctors here that I live a really bad state/city to have complex medical issues. That's scary to hear from a Doctor that works here, and I've had 3 tell me this. Hi AZ Girl-- Long time no hear, was worrying about you, glad things are going a bit better. The IGG came back a bit low, as it had last year when it was tested here. Not real low just a bit under the level. A few of the tests that were ordered got messed up by the lab here when they tried to transfer them over to the Arizona lab. So now my Doc here has re-ordered what got messed up and I'm wiating to here from Arizona what the next plan is.
  12. My newest symptom. My PCP just classified it as HemiFacial Spasm. I always had eye twitching. Now it's moving down and pulling my mouth to the side. So terribly annoying and scarey. So... part of SFN, Autonomic Neuropathy??? Or something else entirely. He said Gabapentin should help when I start it after I get some labs back. Also said we could try Depakote.....anyone else on this???
  13. Not just Gems, but Diamonds, or in my case because I don't like Diamonds, how about Sapphires!!! My PCP just continues to amaze me. The anxiety I have about appoinments has increased to the point that I stress for 3 days before an appointment almost to the point of panic. Then no matter how the appoinment goes my system goes into what I call "Let Down" mode. It's a bit like what was being discussed here recently, the more stressful the situation the better I did, until one day my body said ENOUGH. So now after something stressful like an appointment, test, procedure whatever..... you can count me out and I'm on the couch, on the floor, anywhere but good for 3 days after. And yup as much as I love my PCP I even get nervous going there because I'm afraid one day he will give up. This is not an unfounded fear, I've had many give up. I know we all have had Doctors give up, I've had them do 180's and 360's from one appointment to the next, so I always hold my breath. My PCP though........... Thinks with me, Laughs with me, Goes way outside the box with me, and reads every single thing I bring him..... including suggestions from this forum. I'm up right now from doing some research on some lab work he ordered that he is having me tweak for him and find the info for him. Thanks to Katybug my task was easy, he wanted information on how Complements can be checked and tested and how they play a role. So he got my Positive SFN labs from out of state. I got the labwork the Arizona Doctor ordered, it was all normal as usual, just the basics ANA, Sjogren's, Gliadin, GAD. Does my PCP stop..... nope I now have orders for ANNA panels, Ganglioside panels, Complement panels, B Vitamin Panels, and a 24 hour urine for heavy metals and catecholamines. And, the strangest that I never thought of.........so far outside the box that I had to tell him I couldn't produce a document stating my travels to have it covered.... Chagas Disease, Chronic variety I haven't been outside the US so I don't have the supporting document but he is looking into how I can get it covered anyway because I have worked in the past with flowers that came from South America and other places that have that disease. The best things are that we can laugh about things that aren't even really funny, like the above conversation about Chagas. Or how I told him my newest symptom is really bad adema in my abdomen. I've always been bloaty but not like this and I haven't gained weight really. He found it hysterical when the point I made when he said it wasn't bad was that I had to buy new underwear........seriously I did. He about fell off his chair laughing. So did my Mother and I. He has his flaws, and he knows it, nobody is perfect, and he has way too many patients. At least he's not afraid to admit that he can't do everything and know everything. Best of all after he says all this.........he tells me I'm the smartest person he's ever met and he wishes he can get me better enough to go to med school.... and if not at least he can learn things from me and hopefully help another person in the future. Can't get much better than that!!! Just wanted to share a positive with all the negatives I've been feeling. There are some Doctors out there that really do find us interesting.
  14. Do some googling for adrenal information, or a website called stopthethyroidmadness has a good article about the best way to get on Florinef. I have extreme reactions to small amounts of meds, so it was scary thing for me to start. But my Cousin with POTS had been on it for 10 years and told me how much it helped. Here is what I did...... Take in the morning not in evening because it will effect sleep. I did 1/4 tablet every morning for 2 weeks. Then 1/2 tablet every morning for 10 days. Then 1/2 tablet in the morning, and 1/4 tablet at 2pm for 10 days. Then 1/2 tablet in the morning, and a 1/2 tablet at 2 pm for a month. Docs said 1 tablet daily might be enough, it wasn't, so after that month......... I did 1 tablet in the morning, and a 1/2 tablet at 2 pm. I did that for a long time and then tried 2 tablets via Docs orders, it was too much. Ever since I've been doing the 1 in the AM and 1/2 in early afternoon. Mainly it helps my Polyuria and Polydipsia and my cold hands and feet.
  15. Katybug is onto something with the complements. I was going to say suggest to them another direction........ have you been tested for Cryoglobulinemia??? It can mimic some types of Porphyria. That was my instant thought with the cold shaking and blue feet.
  16. Been on it for years. Can't say one way or the other that it does much of anything. I grew up around horses so have always been told the benefits of it through Alfalfa especially. Got my Mother to start taking it a couple of years ago and it has helped her Acid Reflux and Halitosis tremendously.
  17. So sorry for your troubles Sue. I know the feeling, it really bites walking in to a Doctor all prepared and walking out with LESS than you had walking in. As much as we try to laugh about it, really it just wears you down. As for antibiotics I was on major doses of Flagyl for Giardia as a 3 year old and subsequent chronic ear infections. My Mom remembers me being on AB's for probably 6 months. Flagyl is listed on SFN sites as a possible cause for SFN. My Mother also took what she remembers as being Bendectine while she was pregnant with me for extreme morning sickness. The drug was later pulled as causing birth defects. So who knows. Then again I've also had several concussions as a young pre-teen. But we believe my issues started at birth so really we keep trying to go back there, and the Docs keep pushing that aside. As for the specifics of POTS every Doc seems to have a different idea of it's parameters. Local Cardio doesn't think I have it because my HR isn't always high. Arizona Doc put me down as "question of POTS" because that day I didn't react to a poor man's tilt, but I was chatting through the whole thing with the nurse answering her questions. My main Dysauto Doc in Alabama says it's not classic, but it is POTS as a HR that goes down to 40 or lower every night and up to 137 for just brushing my teeth isn't normal. Just keep trying to laugh, it's all we can do.
  18. Thank you for all this information you guys, it's very helpful. It will probably be a wait and see about whether we can get up there or not. Might have to wait until next year.
  19. I've had the Gall Bladder emptying scan, mine was the HIDA scan. My Gall Bladder does NOT function well, only 13%. My GI Doc who I trust completely said he feels it's from the interrupted loops and rythms from the Dysautonomia. He feels better not taking out my Gall Bladder because he's had patients with this problem go both ways.....some feel better without it......others feel a million times worse. I'll keep it for now.
  20. Well yet another variable of opposites and similarities within this disease and Mast Cell stuff. I can't tolerate Claritin, never been able to. About a week into I get intense un-relenting Vertigo that takes 3 days to subside after stopping the drug. I've tried it a few times and always the same so I know that it's the Claritin causing this. I've been doing ok on Zyrtec every day for the past year. I don't really feel it makes a difference until I skip a day and then I can tell that it is helping somewhat. However I just recently read about long term affects from Zyrtec and I'm not liking the information. I also don't tolerate Chlorpheniramine well. I do take either Benadryl or Hydroxyzine nightly. As for the H2, I take Ranitidine 150mg 2x day. Sometime I switch it up with a Pepcid here and there. For those that take cimetidine (Tagamet) please ask your pharmacist/Doctor/or google. Cimetidine has bad interactions with a bunch of drugs including Benzo's like Klonopin. I've also noticed some GI symptoms with taking all these H1 and H2 blockers and I do believe it's because we need acid to break stuff down. I've found some relief by adding probiotics, a lot of enzymes, and Apple Cider Vinegar and Aloe Vera Juice have both helped tremendously. Citrus of any kind usually has a bad effect on my stomach too, and Vitamin C gives me instant Migraines.
  21. I am the queen of pillows!!! I am most comfortable with 8 pillows, yup that's right 8. Anything less and I'm miserable. Unfortunately since my surgery last year in June I have been unable to go back to my bed. Even with all those pillows I'm miserable and I have the softest pillows and softest latex mattress available. The 2 medical trips we have made since then have been misery on my joints and bones and POTS symptoms at the hotels. I now sleep either in my recliner, which doesn't offer much room or support. Or on my wide loveseat, again though the only way I have found comfort is this.......... On my loveseat, legs elevated with 2 pillows. Head elevated with 3 pillows. Pillow on side behind my back. Pillow against my belly in case I roll over. It's pitiful. Then add that this "V" position added more pressure on my hips so I added a memory foal pillow under my hips/butt. I'm usually on my back in this upright "V" position in the morning feeling ill and have to roll to my left side for awhile before I can get up and around. But the only way I can fall asleep without my chest pounding out of my chest is to curl up on my left side with pillow pressure directly to my heart area. Any way you look at it though I never get more than a few hours sleep at a time. If I'm on my back to long or roll to my right side I wake up feeling violently ill.
  22. Not sure if it's even possible for me to go, but my local cardiologist really wants me to see Dr. Grubb and I already have a referral from my normal Dysauto Doc, Watkins in Alabama. Obviously it would be a ways out, but that's a very very long trip for us so would take some monumental planning. So what happens usually with his appointments??? Especially for someone that already has a POTS/Dysauto/SFN diagnosis??? Both Docs referring me think that Grubb will have more ideas about auto-immune, Mast Cell, Metabolic, birth defects, Endocrine aspects of what is going on with me. Does he order a lot of testing??? Or is mostly just a face to face discussion??? I know this is asking a lot, but any info would be helpful. Thanks as always!!!
  23. Anyone else??? Skin Biopsy taken at 2 sites, calf and thigh, extremely positive for SFN. Qsart sweat test, normal. The tech that did it said it wasn't normal, but wasn't horrible. Then I get the final report and it said all was fine. I'm Tilt Table positive for Dysautonomia and POTS and have every symptom possible of all of it.
  24. I've been on it for a little over 2 years. Docs say I will be on it for life. My Cousin who is an RN with POTS has said it can cause kidney damage eventually. She's been on it for 14 years now with no problems. She's tried to wean off of it a few times without success.
  25. Add another Horse Person to the bunch!!! Because of my knowledge of horses I do believe it's the excess adrenaline and/or high heart rate that makes this happen. My vet agrees!!! Pain killers on me seem to work fine. Benzo's, Sedatives, Antihistamines........hardly at all. I have always required a large dose of Valium for dentistry work. 30mg orally barely touches me, my original dentist that found this out 3 years ago was shocked. I was also hard to numb. When I had a colonoscopy last year, my GI Doc was worried about the sedatives because of the Dysauto so watched me closely. Super hydrated me first with 2 bags of saline. He used Versed, kept adding more and more and more until my blood pressure started dropping, dropped to 90/57 (not low for me) and asked me if I would be ok because he couldn't give me more. Good thing I'm a curious person, told him to put the monitor in my view and I'd be fine. I was wide awake for the whole thing. When I went in for my hysterectomy I told the Anasthesia Doc about all of it, he said he would watch it. I had never been fully put under for anything before so we weren't real sure what my reaction would be. He put on a Scopalamine patch before I went under as he said it might help to keep me under better. Before they wheeled me into the operating room they gave me the "cocktail" of relaxing stuff. Got into the operating room. My surgeon said hello, introduced me to the other Doctor helping him, all the nurses too, I was making jokes. The Anasthesiologist finally said, "ok she wasn't kidding, give her more", then a couple minutes later I guess it worked because I don't remember anything after that. In January this year I had to have root canals, the Endodontist uses Halcion. I've never had it. He gave me the max dose which is 4 pills, according to him and the office that dose makes most people sleep through the appt and need help getting out to a car. Nothing, Zip, Nadda....they were shocked!!! I was already there and my mental state couldn't take more and by that time I trusted him so told him to go ahead. It took him 9 Ampules of numbing solution ( I believe Bupicaine, NO Epi) to get 2 of the 4 teeth done. During the work on the main affected tooth, he would stop to use a machine that beeped and he'd check a screen, it was checking for nerve vitality I guess. Afterward I asked him what the shocks were. He said the machine uses electrical impulses, but I shouldn't have felt them. Yeah well........... We had to re-schedule for the other 2 teeth, because 9 ampules is the maximum amount they can use by law in one sitting, any more can be lethal. He gave me Valium for the second appt. 35mg barely had me relaxed as usual. This time he opted to try a number that had Epi, he knew about the bad effects and said he'd just try a little first as it numbs better. 1/2 ampule with the EPI stuff and there went the Valium, good effects gone, HR went up over 150, I was numb so told him to start. He switched back to the other number and had to use 5 more ampules for the other 2 teeth. I see 3 dental people, Endo, Surgeon, and TMJ specialist. All 3 say I have Neuralgia somehow related to all of this and they all wrote notes saying I needed to be seen at a specialty Neurology clinic. Don't have any answers yet from the Docs on this. But my body apparently thinks that everything should be numb and tingly while my mouth and teeth should be constantly in pain and feel everything. I hate to say it because it's just sad what brings a smile to my face these days but I get a kick out of the look on medical personell faces when they hear how much sedatives don't work. And my wonderful PCP still can't beleive I'm not passed out cold with the amount of Anti-Histamines and Klonopin I'm on. He's a big guy and said 1/4 of what I take would have him unconsious on the floor. Oh and I should add that when I had my spinal tap. Whatever number they use I didn't feel, and the spinal tap didn't bother me in the least. The spinal headache for 3 weeks after did. In Phoenix 2 or 3 weeks ago when they did the skin biopsy for SFN, the Doc did it himself and he was quite curious as he said most people at least feel the numbing solution that's injected as it "burns" like the shots in your gums for dental. I didn't feel the numbing solution or biopsies and haven't felt anything since at either biopsy site, calf and thigh. I've never felt EMG needles either, at all, not even a twinge.
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