ajw4790

Hi, If you fly out to Ohio, I guess you could try to visit both locations, but I would say to expect to stay at least 3-4 days. The two are not real close together, and not sure if you would drive back and forth, but would not want to drive that distance and then have an appointment that day myself. If you go to both locations what is your goal or what do you want to accomplish? Dr. Grubb is cardio., so would you go to CC to see a neurologist? I would not go to both to see cardios. at the same time. Because one may want to try one route and the other another route, and you can only do one way at a time, and then for the dr. that you do not do their way you seem non-compliant and like you don't trust them and are likely to damage any possibility if assistance in the future. If you want testing done CC is the way to go, otherwise Dr. Grubb of course is very well versed in this field, and works more from the treatment side of things. If you go to CC ANS neuro. they still may likely do TTT, QSART, etc. testing. So, they do not avoid looking at the cardiovascular system. Normally CC, I think, has the appointment with dr and another day for testing. But, if you travel a distance I think if you talk to the drs nurse that you can get it set up to se the dr. and have testing all in the same day. Results are not immediate though... I have seen Bev twice, and felt it was worth it to see her, due to the long wait to see Dr. Grubb. Also, I think if you have seen her, they will later try to get you into see Dr. Grubb quicker than if you were a new patient. I see Dr. Grubb for the first time this week. I have seen ANS neuro. (Dr. Shields) and Rheumy at CC. And had all the ANS testing done as well. I know that others have mentioned follow-up from CC cardio. to be a problem. So, depending on what your goal is... I hope that helps and answers some of your questions!

Hi again! I also have gotten a tailspin affect from hot packs to the abdomen. I guess to to the vasodilation of that area where the heat is, and the following shunting of blood to that area. I wouldn't necessarily stop using the hot packs, but maybe leave them on for short periods etc? If you have stiff neck muscles that is apt to cause migraines, and so to stop treating that is not necessarily going to help anything. That also makes me wonder about if you had tight neck muscles and they were restricting blood flow etc. and then the heat is used it probably could send a "whoosh" of blood to the brain and back to the heart that could start a significant ANS reaction. So, also may help to try to keep your neck from getting too tight. Also, you could possibly think about replacing some of the time you would use heat with massage of the neck. Or try to massage first and then use the heat for short periods? Not sure...

Welcome! You do sound quite a bit like me. I hope that you are able to find a helpful dr. soon!

Hi, Sounds like you are on to something with noticing that you were wearing the heat wrap at the time. I have a feeling that was likely what caused the pre-syncope symptoms. It probably send the autonomic dysfunction of the migraine and sent it into a tailspin.

Hi, Yeah, when I get hiccups they seem to go on forever. Or I get them, they go away, and have another bout an hour later for a few minutes, and have this all day long every couple of hours. I tend to get them more after eating, and after having "gulped" excessive amounts of air into my system. I think before I had read that hiccups can be due to iron deficiency, and after my recent discovery of my super low ferritin levels, I wonder if this may be part of it? (See my recent post on ferritin level- mine was 3, and "normal" should be at least 60.)

Hi everyone! I am so frustrated and overwhelmed by a multitude of things right now. One reason is what the post's title mentions. My sleep dr called today and said my Ferritin (iron) levels are REALLY low! I scored a 3 out of the low normal of 60!!! Thing is I thought the tested my iron (and for overall anemia) before multiple times. I looked at my records I do have, but don't see this being tested before. But, I think I am missing some of my lab work results... so, I am not sure. I will be SO ANGRY if they really had not tested this until now! Thousands of dollars and 10+ doctors to find this out? Seems pretty basic to me, especially taking into account my presenting symptoms! AND actually the rheumy at CC (the "it's the pants"- referring to hair loss dr.) also tested it recently, and called to say I was anemic, and that she would send me a script for blood work to see if the anemia has a genetic cause or more nutritional/absorbtion issue. So, I have to get that done when she sends it to me. Anyone else been told they have this issue? Have you specifically had your Ferritin checked? I think that my presentation my be slightly abnormal, because my hemoglobin/hematocrit numbers have normally not been bad (once or twice slightly low), but not enough to signal this amount of deficiency. SO... What does this mean??? Wouldn't I like to know?! BUT, low ferritin causes heart palpitations, tachycardia, fatigue, memory/confusion/ADHD symptoms, HAIR LOSS, restless legs syndrome, muscle twitches, tremors etc... SO, potentially a lot of my issues could be part of this deficiency, but likely not everything or a cure-all, but it may explain why every medication they throw at me doesn't work very well! It probably can explain a decent size potion of my symptoms, but I don't expect it to be the overall answer of why all the medical issues for myself. If you haven't had this specific test, I would urge you to ask about it. It couldn't hurt (well, more than the needle!!! ). Please let me know if you have gone through the same issue, and if you did infusions etc... Thanks!!!

Thanks for ya'lls replies! I agree that the rubbing of the hair off the legs can occur due to pants (I would think jeans would be the worse), but I guess I had never heard of or seen it to be so widespread, constant, and spontaneous. So, I still kinda doubt it is really what is happening in my case, at least not causing all of the hair loss. For one, recently (year or so) I spend most of my time in cotton pajama-type pants and not jeans, as I was before. So, I figure this would make it less likely? And, too I thought of it in the way of why now, I have worn pants my whole life, and my dad as well. Also, it was a relatively sudden onset for me, but coincided with other increasing/new symptoms. My dad has been getting more and more POTS etc. symptoms as he is aging, weight changes, diet changes (7 years vegan to recent vegetarian) etc. My dads also seemed to be a relatively sudden onset (and he would notice more, due to he doesn't shave his legs), and he mentioned it out of the blue without even remembering I had mentioned the same issue. ALSO, for me the most telling thing is that it is worst (less hair) on my thighs, and this is where the skin biopsy OVER a year ago showed my neuropathy was worse than it was at the ankle and knee. So, I don't know, but that she was so adament that it was "the pants", amused me. I will likely never know. And no I will not try a trial period of not wearing pants! I am glad I am not the only one that thought she was a little quick to jump to that conclusion! I felt kinda stupid right after she said it, and at the same time laughing on the inside that she thought that was the entire reason. Thanks!!!

Hi, I was recently at the CC to see a Rheumatologist, and asked her what she thought about the patchy hair loss pattern on my legs. I have asked 7+ other drs. about this, and none of them have a clue, they say it is unusual, but not neuro, derm, autoimmune etc... So, when I asked her, she just replied "Do you wear pants?". Uh, yes, of course... "Well, it's the pants. I get that too." And that was that. Didn't matter that it was a recent onset, and my father recently developed it as well. None of the other drs. came to this conclusion. I am not sure whether or not this theory has any merit??? Anyone ever heard of this??? Anyone else have this due to pants wearing the hair off your legs??? Weird... but, it still cracks me up for whatever reason... so, I just had to share!

Hi, I did talk with my PCP about some of these things... Of course when I asked about using cooling vests, she had the "smart" reply of why not just use an ice pack or a wet washcloth. (sarcastically: why didn't I think of that... ) So, she isn't of much help with any of this stuff, because she doesn't understand... Oh, well... I tried.

Hi, Yes, one of my main side effects on florinef was that I was unable to sleep much at all. I got one to three hour very restless spurts of sleep (if any sleep) for the week and a half I was on it. So, pretty much I had no real sleep the entire time I was on it. I also believe I had the tachy spurts occasionally. It also messed with my blood sugar which was part of the sleep problem. It got pretty high and then crashed hard. I also LOST 10 pounds of water weight. It was an abnoxious rollercoaster...

Hiya, I really don't have much of a clue... Doesn't niacin cause increased HR etc. too, and that would seem like it would make things worse. Even by itself vasodilation is bad for many of us.... One note I thought of was that they do make a non-flushing niacin that may be good to try first? I don't know...

Thanks for posting!

I just wanted to update and say that things did seem to turn around a little bit, and now I will be headed for the Springfield/Champaign area of Illinois. I figure health symptom-wise I will probably be about the same due to similar climate etc, so I am not as worried about that being a big negative for the move. Also, I will be closer to current drs., so if need be, a visit to them would be much more feasible. So, not ideal, but things are looking better than they did before.

Hiya! Thanks for ya'lls responses. I think it is pretty much what I figured... I am going to try and talk with my dr. some tomorrow, and then maybe call the insurance company.

I have made new friends here on the board! I have learned a lot about different disorders and the human body, in a way they never taught in school. I have learned more about myself and why I have always been so "quirky". If I ever do actually get the chance to practice PT (after finishing school), I have learned more about identifying with and understanding a patient here more than you can ever learn in an academic environment.

Hi all! I was wondering if most insurances will pay or help pay for things like cooling vests? Anyone have experience with this? Do you just get your dr. to write a script for it? Not sure if it is able to be found at any medical supply stores or ordered through them, so could you do this if you order online? Can you do something like send the receipt to the insurance company and ask for reimbursement? I was also curious about this with other aids like abdominal binders, shoes like MBT shoes etc. Anyone know anything about this? Or is it just what ever a dr. writes a script for and you can take to a medical supply store? Thanks for reading and any help you may be able to offer!

Hi, That is awful! I am sorry that this happened to you and others. I am glad that he is now under investigation and not able to continue getting away with such awful acts. I hope that him being held accountable for what he did can help you and his other victims begin to process everything. I did want to add that it should not be taken personally if you do not get a multitude of responses firsthand. I know I read your post the first time shortly after you posted it, but wasn't on my computer, and was not logged in, so I did not respond until I was back on my computer. There are many reasons why people may not post, and I hope that you do not take them personally, because I sincerely doubt that anyone means anything negative by it. It does not mean that people do not believe you or that others do not think that it was a serious offense that he needs to be held accountable for. People do read the boards and are not necessarily a member or (like myself) maybe a member, but not logged in and just bounce into the board to see what is going on quickly. I know many times when I come to look at the board I don't have time to respond, but make a mental note to try to later. Also, many people physically when not feeling the best may come here for support, but are unable to physically and mentally post. I know I am like this when whacked out on a new med... Also, I know I thought when I first read the post and saw it mentioned/suggested that you have it deleted, that I figured even if I do respond, it was likely that it may be deleted, and you may not see the message. So, please try and not take it personal, or get defensive to others on the board. I won't say what to do or not do, as far as having a post on the boards that can be found through search engines. But, I wanted to remind you that although you do not use your name on the boards that they could track your comments down by finding the IP address that posted the comments and then linking it to yourself. So, for anyone who is looking hard enough, they will be able to match comments with a name. I hope that things are going as well as they can be, and that you are able to find continued support here on the boards in regard to this and all other topics.

Congratulations!!!

Hi, I am now on 60 mg of Cymbalta. I worked up from 30 mg after having been on 30 mg for a matter of months. When ever I have increased the dosage I have had time of heart palpitations/flutter and the feeling like having 'the breathe knocked out of ya'. They were normally came in short spurts and after a while I noticed them a lot less. I would say that starting at a smaller dose may be helpful. Also, keep in mind that while adjusting to the Cymbalta, you are also adjusting or withdrawing from the Prozac. Don't change the dosage without discussing it with you dr. first. Also, isn't it in capsule form? I thought you said something about cutting it? So, you can't do that with Cymbalta and I do not know of it being a med that they say you can open the capsule and shake some out to wean your way up like you can with some meds. Again, discuss it with your dr.

Thanks everyone! It is looking like Seattle... I am trying to go with the flow, be supportive, and be appreciative for what I do have. BUT, it is VERY hard. I don't want to move away from the very few drs. that understand me. I don't want to move somewhere that really limits me medically. Now, it is even looking like I may not be able to go to the 5 or so appmts and tests I have scheduled here over the next month and a half... There is so much to do, but so much waiting to know which direction to go in... With the heat and humidity I don't have the energy and ability to do everything in the timely manner it should be done in. Not sure... I am overwhelmed. My parents are having to deal with so much, but at the same time it is times like these they tend to not understand "me", and I am just sometimes seemed to be expected to be wonderwoman and be able to accomplish everything in warp speed. For me it is not just about moving, it is about further loss of independence, leaving the city I had to to medical leave from grad school (so, actually closing the doors on that dream), leaving everyone I know here, leaving the drs and medical services here and the ones (Cleveland and Toledo) that although are a distance are much closer now than what they will be in Seattle. In going through piles in the apartment I have been going across stuff from grad school and the profession I was studying. It has been HARD, I had thought that I was getting to the point that I really wasn't interested in doing it anymore, BUT I now realize I still REALLY wish I could do it. Not to mention my classmates either already have graduated and are in practice or will be very soon. It is very hard to watch them talking about interviews and jobs etc. I know we all go through this or similar situations. It is just hard and I need to vent. I am trying to figure things out and make the best of things, but it is difficult. Sorry, I just need to vent and put my thoughts out there. Anyone have any helpful tips on how to get through tough times like this? Thanks for reading.

Welcome! I wanted to say hi! and that I am very sorry about the position you are currently in. I can't believe it (at the same time I can believe it ) that some drs actually put you in this position. FIRST, I would say please do not go back to the doctors that did this to you if at all possible. I do tend to believe that the ablations were the wrong route to go, and that the drs. should have been much more cautious and knowledgeable before doing this. Then, the fact you require a pacemaker, and things still are not any better... That is crazy! I am glad you got to see Dr. Grubb. I hope that he was of some help for you. I would say that dr at Mayo sounds like a REALLY good idea. I have also heard that Vanderbilt is pretty good with this type of thing, but I do not know a dr. The also have the ANS Clinic down there that maybe if you were able to work with someone there and in cardio. that they may be of assistance. I guess I would say give all the meds a good try, and don't jump into the ablation. Try to find the most knowledgeable dr you can find to help sort this out. You are much too young to have had this all done. I am 25 and can't imagine...

Hi, I wanted to pop in and add a couple of things... I too have the frequent burping issue and have had it for many years, but I have not noticed it to be position related. Many times though it does feel like a way to try to get more oxygen or gasping for air. It is weird and VERY annoying! My family finds it funny and thinks I can help it. But, it can't helped, and I have found if I hold it back it makes that symptom worse, along with some of my other symptoms. Also, to a degree, visible pulses are quite normal (or some of what you described may have been respirations when talking about your stomach). They are likely due to forceful beats of the heart as it is trying to adequately circulate blood to all parts of your body. Also, after a while many of us just become more intuned to our bodies, and notice things we didn't before. As far as working on poor circulation etc. that is something that you have to work on with a dr. If you don't see a specialist, try to find one. Things that can be used are salt and fluid loading, compression hose, abdominal binder, meds (midodrine, florinef etc.), exercise etc... There are no easy fixes or likely anything that is just going to magically fix things. It is something to work on over time in multiple ways described earlier. I have poor circulation due to small fiber neuropathy, EDS, and whatever else is going on...

Hi! I had the blood volume study done at CC earlier this year. It is not a bad test, as far as how you feel during and what it requires you to do. You just have to lay VERY STILL for over an hour, which is the hardest part. It hurt my back. Also, after so many rapid injections that day the vein in my arm got very painful. But, it helped a lot when they applied pressure to the vein when the were doing the injections. Bellamia, I just wanted to say that not ALL of us have low blood volume. Actually, quite fewer than you would think may actually have low blood volume. I DO NOT have low BV, but I have a TON of blood pooling that makes my current BV not sufficient enough for me. So, they still say to TRY and increase blood or fluid volume to help compensate for the excessive amounts of blood pooling that many of us endure. I pool a lot in any position, standing, sitting, lying down, whatever... Hope that helps and that anyone doing the test will find some answers from the test!

Hi all! I unfortunately am looking at having to move in the near future from Ohio. Which Ohio stinks for things like weather, barometric pressure, humidity, etc... But, not so bad as far as drs. go. Don't get me wrong, I have had numerous awful drs. here, but at least Toledo and Cleveland Clinic is relatively close. For those that have experience in these areas of the country, I am looking for information on what it is like to live in these locations??? Nothing is set in stone, or are any of them really "concrete" possibilities per se, but these are the cities that have continously popped up on the radar as possibilities. Seattle is the most likely at this point. The one other from the list of Seattle, WA, Jacksonvile, FL, and the southern/central Illinois, is Miami, FL (which I KNOW is a BAD idea for me! ). For those familiar with these locations, what is your experience on availability of knowledgeable drs, the effects of climate etc. on symptoms, etc.... ???? I am not happy about having to move, or have to move back home with my parents (who are the ones having to move for job purposes). But, I am really not thrilled at all with the choices (or lack of) of the places that I will likely be forced to live. But, at this point I can't hold a job, had to leave school on medical leave and unable to return, and I need the support system my parents offer. But, I feel like these locations stink, and that my parents tend to not understand whatsoever my apprehensions or dislike of these cities. I think they feel I am just trying to be difficult. But, I don't want to have to move somewhere that makes me feel even MORE miserable, AND have less knowledgeable drs. to assist me with the increase in symptoms. Anyone else have this type of problem? What did you do? How do you handle it? Any info on these locations??? I really would appreciate any information! Thanks so much!

I had seen this was one of the newer SSRI/SNRI type meds out there, and had wondered if it would have any benefit to us? I also wonder if anyone has tried it? I find it interesting you have a dr that already uses it in all his dysautonomia pts. Is he a dys. specialist or a local type dr. that is familiar with the diagnosis? Not sure about the hyperadrenergic thing. I thought those that are hyperadrenergic can take SSRI/SNRI's? (Although, I realize it is hit and miss on what works... with the emphasis on miss...).