ajw4790

Hiya, This week will probably be my last chance to have an appointment with this allergist that is familiar with the relationship between POTS and MCAD. I have seen her once before, and she saw the dermagraphism, livedo reticularis, etc. But, seemed to think I did not quite fit the profile for MCAD, but there are just so many quirky things about me, and so many can at least be partially explained by MCAD. So, I still want to find out if I may be dealing with something along these lines. I have a feeling that she will dismiss any concern I have because I did not show any allergies on the RAST test (even though I really do not consider myself sensitive on most occasions to those allergens that were tested). Also, my C3 complement was 157 (high being 178), C4 complement was 29 (high being 42), and IGE of 11.6 (low 7 and high 135). Which reads as normal, but isn't this something that changes pretty frequently (or with MCAD "spells")? And in reality to me the IGE seems pretty low, although not abnormal... For those well versed in MCAD do these results point to anything? Should I ask for additional testing? Still so confused on this topic... Have had some bad bouts of bone pain after direct contact with known irritants/triggers. That throbbing bone pain is some of the worst! I also, recently, had a weird reaction aften a neuro. exam with a different dr. They were checking my pain sensation with the safety pin. Nothing abnormal for me during the test. While still in room and on table after test, my neuropathy pain flared up big-time for what it has been like in recent months. Then this was followed by EXTREME itchiness everywhere that I was poked. Then, within 10 minutes every place that the dr. poked with the safety pin was a nice itchy red spot. My arms and legs felt like they were on fire. It was awful... I wondered if this was consistant at all with MCAD? Thanks for any light anyone maybe able to shine on this topic! I am still searching for anyway to make sense of some of these really odd reactions... Thanks!!!!

Hi, I think sometimes the pain or shock to the system of the needle can cause an ANS reaction, no matter how much/little blood is drawn. I am normally not too bad, but sometimes it seems to sneak up on me. Recently the problem is more of running out of veins in both arms for them to use, due to having so many tests, and my low iron levels are probably hindering the healing of the veins after they are used to draw blood. So, I need to find me some new veins pretty soon!

For me the lack of cerebral blood flow is what can cause me the most problems. It can make me say the stupidest things, do silly and embarassing things, and sometimes act/look like I am having a stroke. I really freaked out some of my professors before (who are PT's- so they are used to stroke like symptoms) because I was so out of it and had extreme difficulty carrying on a conversation with them. This is what lead to my be forced out of school. They said they were very worried and they had thought I was having a stroke. I recently asked a dr. about all of this, and if these types of spells are not more or less equal to a TIA in their presentation. He agreed that you can pretty much act/go through a period like someone having a TIA would, without actually having a TIA. The cause of the symptoms is different, but both can cause lack of blood and O2 to the brain causing a TIA like reaction. So fun...

Yeah, I never have a day without symptoms. Probably only time I can go an hour without symptoms is when I am sleeping. But, I also have sleep apnea etc., so I am not sure how accurate that thought is...

Hi, Thanks for ya'lls input and help. I did want to clarify that although I do have concern over how genetics may affect a child she may have, that was not my overwhelming concern, and I realize that is for them as a couple to discuss and decide how to procede. I did not ever intend to "try" to tell her that she should or should not have a child. I am more concerned about something going wrong during pregnancy that may cause a miscarriage/stillbirth or put her (the mother) in serious danger (issues with erratic bp, bleeding out etc). It is just as her sister I don't want anything to happen to her or for her to have to go through all of that. Especially if just being a little more watchful, and taking a few precautions during the pregnancy could greatly increase the probability of a healthy pregnancy and birth. So, it is hard to just say nothing. I don't want to be pushy, but I also guess I didn't see much problem with in bringing up in passing in a casual non-confrontational way, that if she ever wanted to review family history etc. prior to family planning that I would be available to discuss it with her. I just do not feel that she has all the knowledge to give to the drs., and that she sometimes likes to omit things if she feels they are not relevant when talking to them. I would just feel more comfortable if I knew that she had all the family history facts and shared them appropriately with a competent doctor that is well versed in higher risk pregnacies, and that they do not just proceed as if it was just another "normal" twenty-two year olds pregnancy. I guess I just keep having the nagging reoccurring thought of what if I do absolutely nothing, and something does happen? Something that possibly could have been prevented, but I just was to worried of not being liked and upsetting someone? It is a difficult position, so that is why I wanted other peoples input, and appreciate everyones comments and assistance. I guess I will probably end up doing nothing, but it has been on my mind a lot so I thought I would ask. Thank you!!!

Hi everyone! I have a tough question that I was wondering what other people thought of how to best deal with it? I am 25 y/o (female), and have a younger sister (22 y/o) that is engaged and to be married in September. She recently has been hanging around a lot of other young couples that are all having or have children. I can tell she enjoys spending time with the youngsters and probably wants to have children of her own. Due to the fact that dysautonomia etc. seems to be greatly genetic in our family, I have been wondering what to say or not say to her about a variety of topics in this area (risk for her, fetus, high risk pregnancy planning etc). First and probably one of the most important/hardest things about this, is that my sister and I do not have a very good relationship. We used to, but she got very distant, crabby, etc in her late teens and didn't want to have anything to do with me. She hid this boyfriend (first we ever knew about) for a while, then couple weeks later she went to help him move into college etc. They ended up not in the city they were supposed to be, in a hotel together, and saying that they found an apartment together. AND this was just the beginning... And, yes they are still together 3-4 years later and getting married. So, all around things have gotten better than they first were, but have a LONG way to go. My parents are worried about ticking her off, and her not communicating etc. with us. So, it is like walking on egg shells... (So, I have to be super careful about what I say. My parents think I should just say nothing at all.) So, more background... Many know my situation or can read my sig line, so I will not regurgitate it here. But, for me my issues have pretty much been life long and had epilepsy at age 2. Both my parents have similiar issues to me, but just not as serious or restricting. My dads parents also both had seizures and similiar issues and along with multiple other issues were disabled from a very early age. So, for us there is no denying that there is a genetic component to all of this. As for my sister she already has had one seizure (cause unknown- quite possibly autonomic- took her a while (hours) and meds to come out of it). She also has had issues with Inappropriate Sinus Tachycardia since her early teens. Currently not under treatment for to my knowledge. She took Toprol for many years. She also had severe scoliosis that required surgical reconstruction/fixation a year ago. During the first attempt at surgery she had an ANS reaction and her heart overreacted and delayed the surgery. Of course my family ignored all my attempts prior to the surgery to make sure that the drs. were well aware of family and personal history in regards to these issues. But, then barely saw some merit in my worries after this occured. My sister knows bare minimum about me and my medical issues, due to lack of communication and that she does not want to hear any of it, and pretty much ignores/changes the subject when it comes up. So, in turn I do not think that she is well educated about herself and what she may or may not have going on. Plus, she just doesn't believe most of it. So, I guess my question is what do you think should or should not be said to someone that maybe interested in having a child??? I am concerned about the risk to her and the fetus. I am one that feels information is power, and when put to good use can help a situation out extraordinarily. So, not that she should not try at some point to have a child, but that all precautions are taken to limit any risks. They both (and my parents) seem to be from the ignorance is bliss mindset, and feel that she knows I have medical issues. I guess they feel that it would come up in family history with a dr. and that the dr. would know all, and be able to extrapolate any risks from that. Even without the family history and ANS issues, the scoliosis post-surgery is enough to concern me. At this point she does not know if she has dysautonomia, connective tissue disorder, etc.... What do ya'll think???? (Especially since I have never wanted children of my own, so I figure my point of view is a little skewed.) Thanks for ya'lls help and reading this!!!

Hi, I was also wondering if you had taken in consideration that you moved a couple timezones, and that your "clock" is probably messed up and resetting itself. Also, I could see myself requiring different dosages of meds based on living in different locations/environments. So, possibly for your body to work optimally, you may need a larger dose in your new environment??? No idea, just thoughts...

BellaMia, Hi, I saw your comment on craving meat, cereal, and ice cream... I wanted to say that recently this has been me! This came around at the same time of the diagnosis of low ferretin (3), and iron deficiency anemia. Because this can affect so many things, including arrythmias, make sure that you look into it and get assistance on effectively treating it. If I remember correctly you said you already know that you are deficient. It really affects so many things, fatigue, heart, muscle twitches, etc. It is awful, and very uncomfortable, but at least there is a way to try to treat it. I hope that you are able to eat more, and of more variety.

Hi, I am curious about this topic... What type of things were you wanting a dog to assist with? I guess I just wasn't sure how much help they could be, and if some of the things that you require some assistance with couldn't be helped by consulting with an occupational therapist to find easier and alternative ways of doing things? (i.e. reachers, emergency call buttons/watch, grab bars, shower chair etc). Part of what was drilled into me by a POTS specialist is that are current "job" is to work on reconditioning ourselves and to find ways to overcome all of these challenges being thrown at us. I get this to a point, but for many of us there is damage to our bodies that is not going away... But, I suppose it is best to try to do as much as we can in our own time, with slow baby steps... Many times a task of standing to fill three water pitchers at the sink is enough of a task for the whole day for myself. So, I guess I was wondering if before jumping to that, if you had looked at all the other options out there for what you are needing assistance with?

Hiya, I think the symptoms that your are describing are caused by orthostatic intolerance. I get this all the time too. It can be caused or brought on by many things, and there are many things that can help decrease the episodes or their severity, but not really anything to stop them. Because, it is more of a blood volume/pooling/dispersal issue, you can try to do things to decrease the pooling and help encourage more blood flow to the brain. As far as how to describe, I think you got a lot of good ideas! I have yet to find the magic phrase. I think that this may be a case for many people of "seeing is believing". Meaning I think that most have no clue until they see you turn grey, weak, and almost pass out. Also, if done right I think that reminding or telling people when they have a cold/flu etc. that how run down etc. that they currently feel is how you feel on a daily basis. This may not work for some, and they may soon forget, but at least it is a more tangible metaphor for them to try to grasp.

Hiya, I just wanted to add that it would be well worth a call to see how far in advance they want you to go off of them. Also, try to get a schedule from them on how to properly wean yourself off of the meds. It is often most beneficial to ask to speak to the nurse of the dr that you are going to see. They are much more apt to give appropriate directions than office staff or the lab where you are being tested will give. You will need to WEAN off the meds. If they are not helpful, consult with your PCP.

Hi, I don't know... Not sure I have ever gotten anything quite like that?... Wondering if it could be something like livedo reticularis? Or all the blood pooling in those veins due to a position or something that you are in? Not sure... Med related, possibly? I don't think it sounds like something to be worried about, but if it persists and is bothersome, talk to your dr. about it. Good luck!

Hi, Just quickly jumping in here... haven't been on here for days and trying to catchup... Not sure if anyone has mentioned this, but similar polls have been done before on other forums/locations as well. I know that drs. or "the go to response" is that this is an equal opportunity disorder overall, but some do go as far as to say seen more in Caucasians than other ethnicities. And of course seen more in females... (I know, not an ethnicity ). But, I think that the Caucasian link that is sometimes described can be attributed to access to healthcare, and achieving a diagnosis. Anyways... I am seriously ADHD at this moment, post Starbucks Venti Frappacino to get me through moving day! On other forums it seemed like from the responses that were given that there was a VERY strong link to Germany/Poland area and the United Kingdom. BUT, at the same time I wonder how much of this is a language or healthcare barrier OR genetics? Who knows? I always go back to wondering if it is anything like Familial Dysautonomia in its origins/predominance in the Ashkenazi Jewish population... I know they are not the same thing, but if at some point there was enough mutations of certain genes in these populations to create different, yet similar disorders??? Not sure that makes any sense... Personally I feel that for those that dysautonomia and related issues are genetic in nature that the majority would trace back to a few areas of the world/ethnicities over the other areas. I also think that other evolutionary type things come into play (i.e. survival of the fittest-> would any of us survive in the desert??? No, not for very long, we would either die or move to a climate that would accomodate us). Another thing that could shape something like this is, whatever that word is.... for over time a populations genes changing to accomodate for their environment. Like some populations have traits or defense type mechanisms to help them survive their environment. So, if in a really hot and humid environment, then over time the populations genetics could adjust to accomodate this. Or whatever... if I only had a functioning brain!!! Makes you wonder if it is natures way of saying, Hey! You are trying to live in the wrong place! You are are genetically wired for... (insert desired location here)... Maybe that is why I just made my eighth move in my life of 25 years... Maybe we were not all supposed to have a migration free-for-all? OR MAYBE I just have had too much caffeine and no sleep in 2-3 days???

Wow! That is awful that they left and didn't bother to tell you! Goodness! AND nowhere to turn to get the meds? I hope the PCP or someone will be able to help you with that until you find a new dr!

Thanks for posting! I had not seen this and found it very interesting!

Hi, If you developed a true allergy and not side effects or a sensitivity to the drug then I would think that you are likely still allergic, and the dose is not likely to matter. I would not risk the chance of having a severe allergic reaction. I would consult with a doctor that will listen and take the matter seriously and give you an educated response. If they seem to not listen or brush off your question, you may want to seek a different opinion. If you have an allergy to something it is not worth going into anaphalactic shock to just take low dose asprin. Hope that helps!

Congrats on that things are going better!!! Sounds like things have greatly improved for you! Updates like this are greatly appreciated! Thanks for posting and hope things continue to be better for you!

Congratulations!!! Sounds like things a A LOT better!!! WOW! That is great! Thank you for sharing your story! It really helps to see that some people do get to feeling better and things CAN improve! Sometimes this is the kind of information that someone really needs to see to help them see some light at the end of the tunnel! Congrats! Keep us updated!

Thanks Michele!!! Yes, I had tried to PM ya before when your box was full, and hadn't gotten back around to chatting with ya! Totally forward any names of drs to look up (or avoid) in the Springfield/Champaign area and Chicago. I will be looking for PCP, ANS neuro, possibly ADHD dr, endocrinologist, rheumatologist, cardiologist, possibly hematologist, sleep dr and clinic, ans an allergist. Any help/suggestions you may have would greatly be appreciated!!! THANK YOU!!! If anyone else has any suggestions PM me! I am looking for any and all info!!! THANKS!

Yes, I can totally identify with what many of you are describing! This can be one of the more frustrating symptoms at times, because it is hard if not impossible to explain, it happens for a split second, but multiple times a day. It can make you feel unsteady etc. and not want to do a whole lot due that you don't feel comfortable in the space you are in due to your positional/proprioceptive sense being totally off.... CRAZY! I have no idea what to do about it or how to avoid etc... A mystery I would like to be able to solve...

Congratulations!!! It is always great to hear success/recovery stories!!! I hope that you are able to find a job that you enjoy! Hopefully your symptoms will stay away! Thanks for including what helped you! I have to say some of what you said sounds like me... The Atenolol 25 mg seems to not do too much... Thank you for sharing! Stories like this really help on the tough days!

Hi all, I am in the final stretch prior to moving to Springfield, IL and have been trying to cram as much dr. appmts. and testing in while still in Ohio. In a lot of ways I still haven't processed most of what I have learned/been told and hope maybe this will help... I am trying to think how far to go back... A couple of months ago I went to the allergist that actually knew about POTS and it's relationship with MCAD. I saw them the one time and had the blood tests that all came back fine. I hope they will do more in depth tests at the next visit I have at the end of next month. For the MCAD experts: Is testing complements 3 and 4 (I think-don't have stuff with me now) and methylhistamine (or something like that- my brain is FOGGY!) enough to rule it in or out? I am kinda afraid that just won't look deep enough into it... I also FINALLY had an appmt. with the sleep dr. Sounded like she did think that I do have Delayed Sleep Phase Disorder. I was glad she seemed knowledgeable about this! Shame I have to move away!!! So, she ordered the blood tests that I did and came back with that Ferritin level of 3!!! Which I will start treating with iron supplements. She also ordered an actigraphy test to see how much I move at night, but I have not had it yet... (waiting on equipment to become available). Anyone done this? And I also had the incredibly wonderful torture-filled sleep study... man, that whole thing was a trip! Not, wanting to do that again! (not so much the test, but the environment...). But, I was able to kinda sleep, I think they got a lot of good data. I was having a "good" RLS night to demostrate the leg issues. I also woke frequently, every noise woke me etc. Had some of my decent sized twitches too... But, have not gotten the full results yet... BUT, very unfortunately I do I have Obstructive Sleep Apnea, which I think is a big surprise to ALL my drs! Not happy due to not seeing myself wearing the CPAP machine! How many people here have sleep apnea (I know of a few)??? Also, anyone use/do any other treatments than CPAP? There is a bunch more of update and even more questions that I will wait for later on! This is already longggg!!! Thanks for reading and any info ya'll may have!!!

Hi, The BP decrease with standing (and HR increase) are not uncommon with "just" POTS, not all peoples shoots up (mine doesn't, if anything it tends to go down). And for many they may maintain a relatively stable BP. Mine tends not to change much, and I think is more apt to go down than up. If it goes down it means you are getting closer to a faint (or near syncope). So, if anything this leads more to NMS/NMH ("S" is for syncope). So, NMS is a neurally mediated response to standing of syncope or fainting. If you don't faint, but are hypotensive then you would more likely fall under the NMH umbrella. I think for PAF your BP would have to be all over the map, among many other symptoms... Do you have supine hypertension? Here is a link from Vandy on PAF. http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4790 Not sure from what you said how much this dr is "in the know"??? Interesting to see what he comes up with and what he bases it on?!

Hiya! Yeah, I get this, sometimes more than others. Severe, debilitating, muscle weakness and fatigue. It is part of POTS/dysautonomia. It is a side effect of all the things that are going "wrong". I think a lot of it is due to decreased blood and oxygenation to muscles. I think that there are also many other things going on... It has been discussed before, I wouldn't know where to start really, but you can try some searches on the topic. But, yeah I have this- where every, single, movement, takes precise concentration and extraordinary effort to accomplish it. And the man, my arm feels like it weighs a ton, so I can't put up my hair or do anything overhead. AND, my favorite... Where you feel so incredibly heavy that it is exhausting and extremely uncomfortable, and all you want to do is lay flat, and get to the lowest elevation possible. So, if in bed it may not be enough, and have to crawl down to floor and make self as flat as a pancake. If upstairs may feel very uncomfortable until go downstairs to lay on floor. Meanwhile laying on lowest level floor you are wishing you had the energy and ability to get even deeper (and closer to earths gravitational pull at its core), and dig your very own POTS HOLE! Sometimes I feel like gravity is winning so much that it makes me want to get to the absolutely lowest place on earth. It is the weirdest feeling! And incredibly uncomfortable!!!!

Hi, You will see more fluctuations in the morning as you "rehydrate" due to excessive fluid loss overnight due to laying horizontal to sleep. This is why tilting the bed is recommended. So, in the morning it is important to take your meds and rehydrate. If you overdo (or just do) caffeinate to early you are apt to just make things worse. Caffeine is a diuretic. Ingesting salt may help to retain some of the water consumed. Eating and being active and moving around will also help. As far as drinking a lot of water relatively quickly, there are studies and some drs. recommend if you have a bout of low BP, to consume a glass of water in a relatively short period of time (less than 5 min. I believe). This causes a bodily response that automatically increases your BP. BUT, it can not be done frequently due to possibility of water intoxication. But, it can help when you feel ultra-cruddy... Hope that helps some!