Michelle F.

Julia, What kind of specialist dx'ed you? I have had strong suspicions about eds with myself, and others here have mentioned I should check it out. My cardio has talked about sending me to a rheumatologist, but I want to be sure that the person I see is familiar with eds, just in case. What is the connection with eds and dysautonomia? I have NCS. Thanks, Michelle F.

Ernie, I read your post, but I have not read all of the responses. I do not have words of wisdom to offer, but I do have love and support to give. I am so sorry. One (maybe more) responses said to "SCREAM". I have to agree! Not only will you be helping yourself, but you will be working toward saivng future victims.....maybe not necessarily only "his" victims. If you keep screaming, maybe consequences will come and then other would-be violators would be deterred. I am so angry and so filled with compassion for you. Though I have not met you, you are quickly becoming someone I greatly respect. I believe coming here for support was a great first step, but it needs to not be your only step. SCREAM!!!!.....until someone will listen! Consider contacting an organization that specializes in helping rape victims. You are a brave woman. Hugs, Michelle F.

FLOP- Thank you so much for sharing the link to the Spoon Theory! It really touched me and I think I will always remember it. Michelle F.

My dh and I use "Zilactin-B" which is found in the Orajel section of stores. The label says "long lasting mouth sore gel; oral pain reliever; provides fast, temporary pain relief from canker sores, minor mouth sores and gum irritations, denture and brace pain.". You just put a little on a Q-tip end and apply to a somewhat dried area where the sore is. Try to let it air-dry on there, while it provides a sort of coating on the sore. It might sting a little, but it does help! I'm sorry you are having these. Michelle F.

Hollie- Thank you for your response and information. What kind of doctor treats vv's? My pain or sting has moved up my leg from knee to middle thigh on the outside of my right leg. I have also had discomfort below my knee today, also. I "think" it is vascular, but it is possible that it is referred pain from my knee joint which is more hypermobile than usual. There is a vv where it hurts, but it looks deeper than most of my vv's. I have not noticed a lump, but will check. This would happen the day after I went to my pcp for a pretty uneventful regular check up. Oh well! I do see my new cardiologist for a re-check in one week, so if this doesn't progress, I'll let her know about it. Thanks again. Michelle F.

I woke up tonight with my right leg hurting/stinging just above my knee on the outside of my leg. I got up and elevated my leg, so that I could "look it up" and I think it is getting better. I've never been awakened with this kind of leg pain before. It seems vascular. I do have chondromalacia patellae (cartilage problems causing bone on bone bruising ) and varicose veins. I can see a varicose vein where I am hurting. I have NCS and have begun to wonder if the blood return from my legs might be the "cause" of my dysautonomia. There's just something in me that wants to know what the cause is. I guess I think if I know what is causing my illnesses, I might be able to get it fixed. Can varicose veins (vv) play a role in the blood pooling issues that we have with NCS? Is there an increased risk for blood clots with varicose veins? If I were to have a connective tissue disorder, might vv be a symptom? I'm sleepy, but hope I make sense. Thanks, Michelle F.

I agree with jjh! I have felt guilty for not always being the perfect mother and raising my voice when there is so much noise...with 5 children in the house. With this pretty new discovery of "sensory overload", it has been easier for me to avoid situations that overstimulate me....or at least for me to realize that there is too much going on around me and make some decisions that help make it quieter. I still make some bad decisions, but knowing what the problem is on many of the occasions has helped! I don't know if I made any sense. I really need to be in bed. lol Michelle F.

Susan- What a scare! I'm so glad last night seems to have a happy ending...at least with the allergic reaction. I do hope she feels better soon. Michelle F.

Alicia, I've taken Klonopin for 3-4 weeks and it has been helpful in calming my CNS at night and allowing me to sleep, which has been a problem because I have Periodic Limb Movement Disorder. I think it has been a help...even with my ability to tolerate much noise. I messed up and took one this morning, along with my BP med and I want to sleep. Sure didn't mean to do that! I have two issues with my hearing. My ANS has been in overdrive and when I hear too much noise, it adds to my irritation and overwhelming feelings. My Meniere's causes a low tone pretty-constant ringing. I have figured out that if my BP is high and I think if my HR is high, my tinnitis is much louder. I have hearing loss and a lot of noise around me makes it harder to hear (focus). I was on a diuretic for about 1 1/2 years, then dx'd with dysautonomia and taken off the diuretic and now have increased sodium intake. My body is confused. I am doing fine though. Regarding my ears, I cannot really tell a difference after adding the sodium.

A couple of years ago, I went to Shea Ear Clinic, Memphis, TN (almost 5 hours away) for my third confirmation that I do have Meniere's. I was in denial. Anyway, the doc did confirm Meniere's, but let my neuro know that he believed most of my problems were central nervous system related. Until that point, my neuro had been treating my case as though all of my problems were Meniere's related....at least I felt that way. Shortly after seeing the ear specialist, my neuro told me he believed I was having ANS issues. Now, I know more, especially after seing a knowledgeable cardio who said I have NCS, based on a TTT. I have been extremely sensitive to sound for the past two years. Radios in the van drive me crazy. Reverberation in rooms where there is a lot of talking also bother me alot. Loud preachers and speakers...etc. Anyway, the cardiologist put me on a beta blocker and Klonopin within the past three weeks. My dh and I both were shocked when "I" was the one who turned on the radio in the van!!! It's like my CNS is calming enough for me to tolerate noise so much better. It is not as painful (I say irritating when it comes to the ANS part of it). I do have tinnitis, but I believe I have adjusted to it, probably because it is not as severe as so many other people's. At any rate, my noise sensitivity is due to both the Meniere's and ANS dysfunction. Feel free to send me a personal message if I can be of any help. Good luck!

I'm sorry you do not have the support you need so much from people in your life that are in such key roles. I have a little of that, but it is from relatives that live far enough away, that we just do not have much contact with them. This is helpful for my own state of health. Holidays are another story. I do hope that something will happen to cause a change of heart and mind for your parents. You have a lot of support here and I am glad you came here to share your struggles. Michelle F.

I'm so sorry, Lolo. I hope your head heals quickly. Michelle F.

Every now and then I will have their very odd feelings in my arms and hands. When my arms are down, beside my body, it like I can feel the blood trickling or running down my veins into my hands. Then, when I hold my arms up, it's like I can feel the blood runing back up into my arms from my hands. I hope this makes sense. Has anyone ever experienced something like this? My hands are numb and the dexterity is not what it used to be. I'm 42 and recently dx'd with NCS. Any ideas why I'd feel this? It's really like I can feel the gravity pulling the blood through my veins!

Thanks for your comments. I will take both dd's BP's & HR's lying and standing. Regarding the bone infection, I've really had to be on top of that, in addition to the NCS stuff I have. I was well on the way to getting her set up with a new infectious diseases doctor who really knows his stuff. However, it was not that easy. Over one weekend, she worsened and I felt I HAD to take her to the clueless one. He put her on another med, which was what I thought he should do. She is getting better, after a long road. There are not a lot of I/D doctors around here. I do have a back-up plan of getting her referred to another, if it comes down to it. So far, so good, though....finally. Thanks all!

My 15 yo dd has had osteomyelitis (bone infection) on both lower mandibles since she had her wisdom teeth removed in December, 2007. She had just had her braces taken off and it was recommended that she go ahead and have them removed, before their roots started to really develop. There would have been absolutely no where for them to go, except maybe up near her sinuses. When she came home after her first surgery, she fainted, without warning, while standing waiting to get in the house. This was about 2 hours after the surgery. We do not know why she has had infection, nor what kind of bacteria we are fighting. She has just now in the past six weeks, had success with one of the antibiotics they have had her on. She has an oral surgeon and a admittedly, clue-less, infections disease doctor. Since she has been down-and-out with this infection, she has started telling me about her eyes "going black" when she stands up. She said this has been happening since before her December surgery. She said this happens about 75% of the time, when she has been sitting relaxed and then gets up and begins walking. I don't "think" she's describing presyncope, but visual disturbances. Oh, btw, she does have vasomotor rhinitis, since birth or at least early infancy. I was thinking I would let her get relaxed and then take her BP & HR when she stands, to see if it is related to that. What do you all think? I know this may be "normal", but I really don't know what that is anymore. While she was telling me this, my 13 yo dd told me that she does this too, but she sees spots more often, than blackness. She's been doing this for a while, too. I realize I am talking about teenagers, so maybe hormones play a part, too. Any thoughts.

Does anyone know of a good link to describe this test? It sounds like a pro-longed blowing into a tube. I can say that everytime I have to take a deep breath for doctor's to listen to my lungs, I get even more light-headed. After two or three, even with some time between them, I am real close to fainting.

My dd was dx'd with vasomotor rhinitis by a really good allergist. She did have an allergy test, but I think the doctor's dx was mainly dependent on her chronically running nose and conditions under which she has the most trouble.

I don't know if this helps, but sometimes, right before a presyncope episode, I suddenly feel a relief of pressure in the area of my sinuses near my nose bridge, but at the top of my nose. Since I now realize I have this "relief of pressure", I notice the chronic pressure I have. No drainage, just tightness and pressure. Actually, I've been noticing more pressure in the sinuses on the inside of my cheeks. I hope at least some of this makes sense. My 15 yo dd has been dx'd with vasomotor rhinitis. I wonder if this means she may be headed down the path I am on. Michelle F.

Why did he want you to take Klonopin? I have been on 1/2 of a .5 mg/day dosage for one week because of Periodic Limb Movement Disorder (PLMD). Though my history using it has not been long, I do believe it is helping to relax my central nervous system (CNS) enough to allow me to get to a much needed deeper stage of sleep. I only take it as directed. My reason for deciding to follow her recommendations was because I was feeling so sick. Don't know if that helps at all.

Thank you for your responses. You helped me reach deep within and come to terms with what I know I need to do for now. I have talked with my dh and I will take one day at a time, while holding onto the hope that these first meds will be a help to me. So far, I believe they are. I will see where things are at my six week check-up and go from there. My dh, as a former software engineer, compared my situation to his when he is trying to fix a computer problem. He focuses on one problem and attempts to fix it before going to another problem. He said if he works on too many problems at one time, he might fix some things, but never really know what fixed which problem. This reminded me of what someone said on this forum about starting only one medi at a time, so I would know how each helped or not. It also reminded me of what the cardiologist said. She said she tries to be very methodical and work on one thing at a time. Sounds sensible. Thank you.

After seeing the new cardiologist last week and after about four days of using a beta blocker and Klonopin to slow down my CNS at night, my chest has stopped hurting, my BP is now around 120/75 which is real close to my pre-sick bp, my HR stays around low 60's. I feel a bit numb (maybe less emotions), but I think it may be because I am finally getting into the deep sleep stage at night. I am sleepy during the days (she said this would be normal.) I am now remembering dreams and it has been a couple of years since that happened. I really needed the relief of heart symptoms that I am getting on these meds, so I don't regret going on and starting this treatment. I know I was a high risk for stroke to go untreated any longer, the way my BP & HR fluctuated so. However, now I find myself at the next question- "what next?" My neuro wanted me to schedule a re-check with him after I saw the cardio. I now believe I need a new neuro...or do I? Maybe I should stick with just this cardiologist, since she has had the best clue of anyone, so far. I realize cardiologists and neurologists are not normally interchangeable, but in the case of NCS, might they be? The cardio said my NCS is due to my vagus nerve being irritated (?). If I do go to another neuro, I really think I will go somewhere like Mayo, Vandy or Cleveland Clinics. I will see the cardiologist in five weeks for a re-check. I suppose I could ask her if she believes I might benefit from seeing a neurologist. (?) She does want to talk to me about seeing a rheumatologist at that visit. I agree with her on that. When I read others posts and I see the information they have gathered at places like Mayo regarding their chemistry make-up, I wonder if it could be very helpful to me. I know I am at least for now better than I was by taking the BB and the Klonopin. It does makes sense to me to give it a chance. But in the long run, might it be better for me to do more now. Not knowing me, I realize there is a risk to offer advice, but if it were you...what would you do?

You are NOT a wuss! This was a tough test and you got through it....as difficult as it was and you will hopefully get some help from your doctors in helping treat you. My ttt was not a fun experience in the least. I usually have more presyncope episodes, rather than syncope. I was glad to finally faint after five minutes, which probably were the longest, most uncomfortable five minutes of my life. Consider yourself to have a badge that many have not earned in this society, by surviving the ttt. BTW, I went to a new cardiologist last week and I was so concerned she would make me re-take the ttt. She said she has found that if a person once tests positive on the ttt, they never want to get on it again. She had all the information she needed and did not want to torture me further. You done good. Get some rest and take it easy. Couldn't believe you walked after that!

Thanks everyone. Well, I began the meds. I have always been against treating symtoms and prefer to identify the cause(s). But, with the chest pains and BP/HR changes, I decided I'd better do something. After two days on the meds, my BP & HR have been 120/68ish and HR in the 60's. That is about "normal" for me before illness. My orthostatic intolerance is better, with me bending a little sometimes. That's improvement for me. My chest pains are nearly gone, too. I'm thankful for the relief of symptoms and hope that I am really helping at least one cause (since the cardiologist identified that I have Periodic Limb Movements Disorder). With my central nervous system slowing own with the Klonopin, maybe I will have a relief of symptoms even after I have come of the meds. It's still early to know how well the meds really are helping. I also realize their help can vary from time to time. Thanks so much for your help!

Thanks everyone. Susan- Arranging this appointment was a little different. I gave the telephone number to my PCP and they let me know after two days they were having trouble getting through to the office. After one week without hearing from my PCP, I called the MVP Center (contact information on their website) and it gave me the option of waiting or emailing their office. I emailed them and asked if my PCP had gotten through to them. They called me and let me know they had not heard from my PCP. So, I made the appointment. When my PCP called to say they could not get them, I let them know I had made the appointment. They treated it as a referral and sent my records on to them. If I had it to do over, I would have just taken myself. I think they have many people take themselves to their offices, rather than being referred. I'm sure that's more than you expected or needed to hear.

Who would I see for something like this? Neuro? Rheumatologist? I am currently on no meds, but the cardiologist yesterday prescribed Metoprolol and Klonopin. I think she is right that they can be beneficial to me right now. I have been planning to begin taking these this weekend, but maybe I need to pursue the adrenaline possibilities first. (?) I am uncomfortable waiting very long to get control of my BP & HR, especially since they are starting to go from one extreme to another and the chest pains are increasing. I am going to have to find a new neuro. Maybe I can locate one and then back off of these meds (with cardio's consent) prior to going to them for testing, which I am sure they will do. Sound like a good plan?